Congenital Heart Futures Act of 2017 (S.477/H.R.1222)

Congenital Heart Disease Legislation

 

In February, 2017, the Congenital Heart Futures Act Reauthorization Bill was re-introduced in the Senate (S.477) and House (H.R.1222) by legislative champions:

  • Senator Dick Durbin (D-IL)
  • Senator Bob Casey (D-PA)
  • Representative Gus Bilirakis (R-FL)
  • Representative Adam Schiff (D-CA)

Current Cosponsors (Updated 5/14/18)

Senate Cosponsors – Date Cosponsored
  • Whitehouse, Sheldon [D-RI] – 4/7/17
  • Stabenow, Debbie [D-MI] – 4/7/17
  • Klobuchar, Amy [D-MN] – 4/7/17
  • Baldwin, Tammy [D-WI] – 4/7/17
  • Coons, Christopher [D-DE] – 3/7/18
  • Nelson, Bill [D-FL] – 5/10/18

House Cosponsors – Date Cosponsored
  • Pocan, Mark [D-WI] – 3/28/17
  • Connolly, Gerald [D-VA] – 3/28/17
  • Soto, Darren [D-FL] – 3/28/17
  • Evans, Dwight [D-PA] – 3/28/17
  • Holmes-Norton, Eleanor [D-DC] – 3/28/17
  • Murphy, Stephanie [D-FL] – 3/28/17
  • Swalwell, Eric [D-CA] – 3/28/17
  • Loebsack, Dave [D-IA] – 3/28/17
  • Stivers, Steve [R-OH] – 3/28/17
  • Webster, Daniel [R-FL] – 3/28/17
  • McMorris-Rodgers, Kathy [R-WA] – 3/28/17
  • Abraham, Ralph [R-LA] – 3/28/17
  • Guthrie, Brett [R-KY] – 3/28/17
  • Bost, Mike [R-IL] – 3/28/17
  • Mullin, Markwayne [R-OK] – 3/28/17
  • Nolan, Richard [D-MN] – 3/29/17
  • Fitzpatrick, Brian [R-PA] – 4/3/17
  • Collins, Chris [R-NY] – 4/4/17
  • Velazquez, Nydia [D-NY] – 4/6/17
  • Ros-Lehtinen, Ileana [R-FL] – 4/20/17
  • Sessions, Pete [R-TX] – 5/3/17
  • Griffith, Morgan [R-VA] – 5/19/17
  • Ellison, Keith [D-MN] – 5/23/17
  • Moulton, Seth [D-MA] – 6/26/17
  • Cardenas, Tony [D-CA] – 7/13/17
  • Walberg, Tim [R-MI] – 7/13/17
  • Meehan, Patrick [R-PA] – 9/5/17

Are your legislators on the list?

If not email them, today!!!


Here’s more information about the CHFRA:

Original Congenital Heart Futures Act

First passed into law in 2010, the bipartisan Congenital Heart Futures Act was groundbreaking legislation authorizing research and data collection specific to Congenital Heart Disease.  This law called for expanded infrastructure to track the epidemiology of CHD at the CDC and increased lifelong CHD research at the NIH.

Since the enactment of the Congenital Heart Futures Act, Congress has appropriated $11 million to the CDC for these activities. The Congenital Heart Futures Act also urged the NHLBI to continue its use of its multi-centered congenital heart research network, the Pediatric Heart Network (PHN) that help guide the care of children and adults with CHD. Together, these efforts have improved our understanding of CHD across the lifespan, the age-specific prevalence, and factors associated with dropping out of appropriate specialty care.

We are excited that the reauthorization of this important law will allow the CDC and NIH to build upon existing programs and focus on successful activities addressing this public health need.  First re-introduced in 2015, the CHRFA did not get passed during the 2015-2016 Congress.  It was reintroduced in February of 2017 with some changes to the language to help forward movement of the bill, but the basic intent of the legislation is the same.

Key Aspect of the new Reauthorization Bill

The CHFRA continues these important activities and builds on them by:

  • Assessing the current research needs and projects related to CHD across the lifespan at the NIH.The bill directs the NIH to assess its current research into CHD so that we can have a better understanding of the state of biomedical research as it relates to CHD
  • Expanding research into CHD. The bill directs the CDC to continue to build their public health research and surveillance programs. This will help us understand healthcare utilization, demographics, lead to evidence-based practices and guidelines for CHD.
  • Raising awareness of CHD through the lifespan. The bill allows for CDC to establish and implement a campaign to raise awareness of congenital heart disease. Those who have a CHD and their families need to understand their healthcare needs promote the need for pediatric, adolescent and adult individuals with CHD to seek and maintain lifelong, specialized care.

This comprehensive approach to CHD – the most prevalent birth defect – will address a necessary public health issue and lead to better quality of life and care for those with CHD.

Here is the complete text as introduced in the House on 11/5/15. There are differences between how the bill in the House and Senate are written, based on key factors in the political process for each.  This is anticipated to be reconciled later on in the bill passage process.

If you have any questions about this legislation, please contact our Director of Programs, Amy Basken, at abasken@conqueringchd.org.

If you are interested in becoming an advocate for this important issue, visit the advocacy section of our website which contains information about signing-up, as well as tools to help you be an amazing advocate.

Together, we will CONQUER CHD!


Sample email:

Send an email, today!
Sending an email is simple!!

  1. Find your legislator’s contact information.
    1. Visit  www.senate.gov or www.house.gov
    2. If this is your first time reaching out, use the contact form on the legislator’s website to send your email.
    3. If you have identified the Health LA, or had a previous contact with your member or a member of their staff, please feel free to use the direct email address you were given.
  2. Copy and paste the sample email, below, and personalize:
    1. Include your legislator’s name
    2. Add your own personal story where indicated
    3. Sign with your name, city, state and contact info
  3. Send it!

—— SAMPLE EMAIL —–

Dear Senator/Representative XYZ,

As you are working on appropriations requests for FY2018, I urge you to show your support for continued funding of essential congenital heart disease-related public health research and surveillance initiatives at the Centers for Disease Control and Prevention.

Congenital heart disease is the most common birth defect and the leading cause of birth defect-related infant mortality. Nearly one third of children born with CHD will require life-saving medical intervention such as surgery or a heart catheterization procedure. With improved medical treatment options, survival rates are improving with a population of 2.4 million and growing. However, there is no cure. Children and adults with congenital heart disease require ongoing, costly, specialized cardiac care and face a lifelong risk of permanent disability and premature death. As a result, healthcare utilization among the congenital heart disease population is significantly higher than the general population.

As part of these ongoing public health surveillance and research efforts, the Centers for Disease Control and Prevention recently published key findings that report hospital costs for congenital heart disease exceeded $6 billion in 2013.

Congenital Heart Disease is common and costly, and attention to the needs of this community is critical.

We urge Congress to cosponsor the Congenital Heart Futures Reauthorization Act (S.477/H.R.1222). To cosponsor this important legislation please contact Max Kanner (max_kanner@durbin.senate.gov) with Senator Durbin’s office or Shayne Woods (Shayne.Woods@mail.house.gov) with Congressman Bilirakis’ office.
This is important to me because: (ONE-TWO SENTENCES)
Share your story briefly, here.

Odds are, someone you know has been impacted by the most common birth defect.

Join us as together, we are #ConqueringCHD.

Sincerely,
Your Name
Address

A 2nd Opinion: Finding the Right Care

Although we know it’s not Thursday, this week we’re doing a throwback! We are always working on improving the transparency between patients, and the doctors. In our continuing conversation of transparency, please read this family’s story in navigating the difficulties of finding the right care for  their little boy, John… Spoiler alert, there’s a happy ending 🙂 This was originally posted on July 25th, 2016. 

We moved to a new community a couple of years ago and it was time for my three young children to see a dentist. We had no information to assess what dentist was the right one for our family. Who specialized with children? Who had years of experience in order to master their skills? Who had qualified assistants who performed the important cleanings and post care? Which dentist had their patient’s best interest in mind instead of lining their own pockets? But when I stepped through the front door, I knew I was in the right place. On the bulletin board in the waiting room were the hand-written words, “Love People. Use Money. Don’t Love Money and Use People.”

Five years ago we stepped into the new community of Congenital Heart Defects (CHD’s) when I was pregnant with our third child, John. He was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) and would need three open-heart surgeries within his first few years of life. The first, and most invasive, surgery would be needed within days of birth. The limited information parents have when researching a dentist is eerily similar to choosing a pediatric heart surgeon. But this was not a small cavity that needed to be filled.

Norwood

Finding this care was not easy. It’s a big decision left to chance because factual information is difficult to find and, if you’re like me, parents often don’t know who or what questions to ask. My conscience propels me to publicly explain the difficulties we had leading up to our son’s care decisions, in hopes of raising awareness as to what’s been termed as the “transparency issue” in the pediatric heart world.

DIAGNOSIS

I was around 22 weeks gestation when the ultrasound technician couldn’t find the left side of John’s heart. The left ventricle is responsible for pumping blood to the body. Hypoplasia means “under formation”. I wondered what I did to cause this severe heart defect. Was there a day I forgot to take my prenatal vitamins? My husband and I both shut down. We were hurting deeply and naturally concerned for our unborn child and the ramifications this would have on our marriage, other kids, finances, job, and all the responsibilities it takes to be a good parent to a child affected by CHD.

Family Reading

Together as a family, pregnant with baby John, HLHS

We had a hard time remembering what the acronym HLHS even stood for. It was all very overwhelming. The internet was our first teacher, but later, when we met with a perinatologist (a high risk OB physician), our suspicions were confirmed. We were completely unaware that there are hospitals willing to perform invasive, complex surgeries on fragile infants with limited experience or success.

DOCTOR APPOINTMENTS

The doctor, in his quiet voice, told us it was an especially bad case of HLHS because of John’s extremely small aorta. He said there was a chance we could lose the baby in utero. Twice, he brought up termination. Thinking back now, I find it illogical that presenting termination of our child as an option was legally required, but presenting transparent information about various pediatric heart centers and their outcomes, which can give heart kids a fighting chance at a qualitative life, was not.

So many questions were racing through our minds by the time we met with the pediatric cardiologist. We were eager to trust someone knowledgeable and get a feel for what life was going to look like for our family.

I was pregnant and tired when the cardiologist performed a thorough and exhaustive echocardiogram of all the tiny little valves, vessels, and arteries of John’s quarter-sized, two-chambered beating heart. Afterward, the cardiologist sat at eye level with us, showed us diagrams of the heart, and confidently began to explain the three open-heart surgeries that were needed to save John’s life. The cardiovascular system of our newborn baby’s heart needed to be completely reconfigured, including extensive reconstruction of his tiny aorta.

But a thick, confusing blanket of vagueness descended when I asked where we needed to go for these invasive surgeries. He shrugged his shoulders in response. I asked about heart kids I was following on social media and he told me their hearts were great, but it was the eating issues they struggled with. There was a negative connotation in his voice when he answered our questions about other hospitals in the area, suggesting that a teaching hospital would just have a lot of doctors running around, telling us what to do. His expectation was to stay local for the surgeries.

The cardiologist removed himself from the conversation. He never gave us any qualitative facts about statistics, credentials, or historical experience. There was no discussion about recovery and the complications that can easily arise after surgery. His indifference was hurtful and placed John in a dangerous position. Something inside me told me to protect my child from this practice.

Hands on Pregnant Belly

Therefore, we entered into our own research process completely blind and on our own. There was so much at stake and the pressure was emotionally exhausting.

FINDING THE RIGHT CARE

We had no idea where to start. On the internet I read dozens of blog posts, describing the daily ups and downs of post-surgery recoveries. Almost every writer was advertising whichever hospital or doctor they had become emotionally attached to. Hospital websites were filled with marketing techniques. The culmination of everything I was reading on-line only caused me to withdraw further.

Out of desperation, I called four different heart moms who all went to four separate heart centers and started to compare notes. My husband spoke with another heart dad that traveled a substantial distance for his child’s surgeries. We called a family practice doctor we knew, who talked to other doctors he trusted. Hard facts were nowhere to be found.

While searching for information, I attended a local support group meeting filled with some of the strongest mothers I have ever met. It was like a tidal wave of one horrific tragedy after another. Tangible information was hard to find, but thankfully there were whispers and private conversations. I ended up getting a name of a surgeon’s nurse who I could call for help.

After consulting with two different surgeons, both at their respective hospitals, we decided for John to receive care at a nationally ranked center of excellence. It was their seasoned experience, as a whole, that set them apart. As I type this, I’m fighting back tears of relief and joy, because there was a high likelihood that John would be dead or disabled had we not found our own way to this great hospital.

Docs Surrounding Bedside

Doctors and nurses surrounding John’s bedside after his 2nd OH surgery, the Glenn.

If you are a soon-to-be heart parent, your child is amazing and worth fighting for! When it’s your blue baby coming into this world, gasping for breath, and about to be placed on that operating table, you’re going to want to be at a hospital that’s not afraid to truthfully share their outcomes of whatever procedure your child needs. If you need help or guidance during your research process, you can use PCHA’s Guided Questions Tool for practical advice.

Transparency improves trust and is essential to improving quality and outcomes. Parents deserve to be properly and truthfully educated on their viable options of where to go for surgery and recovery. Choosing which hospital to go to for invasive surgeries can be the difference between life and death. It can be the difference between your child walking off the school bus to go to Kindergarten or spending the rest of his life in a wheelchair. And what we discovered is, finding a good surgeon isn’t enough. Infants and children recovering from open heart surgery need a supportive and organized system in place due to complicated recoveries. Thankfully, John was at a center that had specialized equipment and experienced cardiac sub-specialists readily available. He is one of the lucky ones. He is the real, beautiful, amazing little boy behind this transparency story.

Toddler Pic, looking down (1280x853)

John was a breastfeeding 9 month old when he crawled across the living room. He took his first steps at 14 months of age. And today he continues to develop normally, graduating from preschool, alongside peers his own age.

We vacationed over the 4th where he:

Jumping into lake

Jumped into the lake with his family and yelled, “CANNON BALL!”

Standing on Head

Stood on his head.

Climbing

Climbed the playground equipment.

Fishing

Learned how to fish.

Ice Cream

Ate Ice Cream.

Boating

And shouted from the hull of the boat, “To the beach, daddy, full speed ahead!”

And that’s exactly what he’s doing. He’s a precious little boy moving full speed ahead as he grows, develops, and begins to understand his important place in this world.


John

John turns 5 years old this month with a bright and promising future in front of him! He lives in West Des Moines, IA with his parents and two older siblings, Abigail and Caleb. He receives care at The University of Iowa Children’s Hospital in Iowa City, IA where he successfully underwent the Norwood, Glenn, and Fontan open-heart surgeries as well as an interventional cardiac catheterization where a permanent fenestration was inserted. He has dealt with complications including Chylothorax, NEC, Embolic Stroke, PLE, and Plastic Bronchitis. He sends out a huge thanks to all who have worked together to make his life what it is today.

Summer Fun! – Laura’s Adventures with CHD at Camp Odayin

For the month of July, we are bringing you stories of how CHD families enjoy the summer, along with tips and tricks on how CHD patients can beat the heat. To kick us off for the month we have Laura Hoagland, an adult CHD patient and avid adventurer. Laura shares her experience with Camp Odayin, and explains why no matter how much you love adventures, the unknown can still be very scary for CHD families.  

 

To say I enjoy summer is an understatement. I LOVE summer! Growing up in the Pacific
Northwest summer was filled with family vacations to the coast, afternoons on the lake and
attending a local summer camp with school friends. As I got older, and especially throughout
college, I intentionally scheduled traveling into my summer
agenda; tours through Eastern Europe, roller coaster riding in
Disneyland, exploring Alaska, sky diving, road trips with college friends down the entire west coast, zip-lining down Whistler Mountain, bungee jumping and paragliding over the Teton Mountains after a day in Yellowstone. This summer, I’m exploring Sweden and Iceland. I’ve always had an adventurous spirit and summer is when my spirit can truly soar. In 2009, as I was finishing up my undergraduate degree in Special and Elementary Education, I quickly became nervous about my future. Not only was I about to leave the safety and predictability of being a student and enter “the real world,” but I was entering adulthood with CHD. My anxiety and nervousness led me to a quarter-life crisis! So I took my problems straight to Google! I began searching for support groups for young adults with CHD. I had met a handful of people with CHD before, but never had I met another person with Tricuspid Atresia, a single ventricle or the Fontan physiology. I felt like I needed a role model, a support group, someone to help guide me on my journey as adult with CHD. I felt alone and I wanted my hand held as I ventured into the unknown. What does adulthood with a CHD look like? My search turned up message board sites and some Facebook groups but I had no luck in finding an in-person
support group for adults. However, I did find summer camps for children with CHD.
Summer camp? Children? I LOVED summer camp when I was younger and as an aspiring
educator, working with kids seemed like summer fun to me! I found Camp Odayin in Minnesota. I was worried that the Midwest would be too hot and humid for my half heart, but after discovering that camp was on a lake and had air conditioned cabins I applied to be a counselor. That summer my adventurous spirit got on an airplane and flew to Minnesota, where I knew no one. As a volunteer camp counselor, I spent the week horseback riding, canoeing, swimming and becoming a human bowling ball down a slip n’ slide, all while wearing silly outfits. Oh, and I got eggs cracked over my head by campers!

As summer faded into fall my memories of camp continued to shine bright. After an exhausting
year as a first-year teacher, I was excited for summer break. I was mostly excited to venture the
1,500 miles and spend another week at Camp Odayin. Before I was to fly out for camp, I was in
Southern Oregon with my family. The week before this vacation I was taken to the ER because I
turned purple. While in Oregon my oxygen saturations dropped into the 70s. My parents,
veterans of traveling with a “high risk” CHD kiddo, kept calm and arranged portable oxygen for
the duration of our trip. I called my cardiologist and we scheduled an exploratory heart
catheterization once our vacation was over. Talk about a damper on summer fun.

Vacation was over. It was a Thursday and I was at Seattle Children’s Hospital about to have my
bajillionth heart catheterization, I’ve literally lost count. As I was walking myself into the
operating room, and began climbing up on the OR table, tears welled up in my eyes. I was 24
and scared. Six years before when I had a heart catheterization, it didn’t go as planned and
surgical intervention was required. This summer, I had plans, so things needed to go as
planned. My nurse looked at me and in a half-sarcastic tone asked, “Would a teddy bear make
you feel better?” I looked at her, tears rolling down my cheek and replied, “Yes. I know I’m 24
and I’ve done this before, but I’m scared of the unknown.” She came back with beautiful quilt
and I drifted off to the calm of anesthesia. When I woke up, my nurse looked down at me and
said, “You don’t need to be scared. You’re O.K.” In recovery, the doctors shared that there
appeared to be evidence of a small “shower” of pulmonary embolisms, and it was time to be
more aggressive with Warfarin. I was to spend the next several days recovering from the
procedure. I explained that on Saturday I had a plane to catch to Minnesota. He said no. I’m
stubborn. Two days after my heart catheterization, I got on that airplane. Some may think I was
running away from something, but in reality, I was running towards something.
My second summer at Camp Odayin changed my life. My recent “heart scare” gave me
perspective, a different view of camp and my role as a counselor. I had a camper so cyanotic
that she required 24/7 oxygen, and she rocked it with more grace and class than I could ever
imagine doing at 15. I had campers who showed off their scars
like badges of courage and honor at waterfront and when they
saw my scars they got excited that mine matched theirs. When I
told my campers and co-counselors that I couldn’t go horseback riding because my leg was still recovering from my heart catheterization, no one looked at me like I was “weak” or weird. They were just impressed that the night before I was piggybacking campers around the ball field. Growing up I was never bullied for having a heart defect, but I always had to explain myself. I had to explain why running was hard, why I needed an oxygen tank or why I had a scar down my chest. No, I wasn’t bullied, but I felt alone. This week, at camp, I didn’t feel alone. I felt like I belonged. I met several other counselors who were adults thriving with CHD. To this day I call them my heart family. The mission of Camp Odayin began to heal my heart that had been emotionally exposed in the OR. My spirit soared, because it was free. Free of explanation, free of judgement, free of worry.

I volunteered for three more summers before moving to Minnesota in 2013 and being offered a summer job on Camp Odayin leadership staff. Now I’m entering my 5 th summer as Summer Camp Co-Director. This isn’t an ordinary summer job, it’s a job full of summer fun! I get to kayak, ride pontoon boats with kids, sing songs, play games, go tubing behind speed boats, throw water balloons and roast marshmallows. At camp, I may act like a “big kid” but Camp Odayin is where I grew up. Ten years ago, I was scared to enter adulthood with CHD, I felt fear as the path of adulthood loomed in front of me…it looked dark, hollow and lonely.

When I first went to Camp Odayin I was struggling with my quarter-life crisis. I searched for people who could help me along the journey, to help me see the light within the tunnel of adulthood. When I left camp
that second summer, I left knowing what adulthood for a CHD looked like. It looked like me. I realized I am the light in the tunnel of adulthood. By living and continuing my journey, one day at a time, my experiences shine bright and illuminate the future, for my campers and other CHD survivors. Deep in my heart, where there was once a hollow, lonely feeling of fear and an emotional wound, there is now hope, joy and confidence. At Camp Odayin I have the most summer fun imaginable, a week to be the role model I once longed for. When I introduce myself to campers, I don’t tell them I have a congenital heart defect, I just introduce myself as Hoagie. My intention as Camp Co-Director is to be my most authentic self
and create a week where campers feel free to be themselves,
no explanation needed. If they notice my scar and bring it up,
I’ll share my heart story. If they just want to talk football, that’s
OK too. In the summer, we’re free to be and as we say each
night at Camp Odayin, “you can be happy if you let yourself be.”

 

 

Laura Hoagland was born with Tricuspid Atresia, Pulmonary Stenosis, VSD and and ASD. Laura has a single ventricle and had the Fontan procedure in 1991 at the age of six. If Laura is not at camp or in her classroom teaching you can find her adventure seeking and traveling. Laura lives by the motto, “half a heart, not half a life!”

 

Father’s Day – A Heart Dad How-To

For Heart Dads new to CHD,  feeling a little lost, or those not sure where they fit in the CHD world, Aaron Carpenter shares what he found, after 8 years on the CHD roller coaster, worked best for him and his family. His tips just might help you too!

I am the dad of two kids, one with complex CHD and one with minor CHD combined with a rare airway disease.  The kids like to say our family is 2 in 100, since every 1 in 100 babies are born with CHD.

Dads generally have two goals when it comes to their family – happiness and health. Heart dads are certainly in that group, but the process of obtaining and maintaining that second goal can be much more complicated.  CHD is your own, often unfair and definitely unwanted, version of normal.  You live by the calendar, whether it is doctor appointments, medication dosing, or interventions and surgeries. I like to say heart dads are regular dads with a lot more to remember.

The voices of heart dads are sort of quiet in the CHD community. If you’re anything like me, you’re an introvert who pays attention to data and isn’t so great with support groups or big picture ideas. I want to be just as involved and just as knowledgeable as the next heart parent, but how do I do that in the world of Facebook groups and blogs? It only took my wife and I eight years on the CHD rollercoaster to come up with a plan, a split of duties so to speak. We are both involved in ways that work to our strengths and preferences. Our sons see both of us doing work in the CHD sphere and we always come together as a family for local CHD activities.

Here are a few of the things I have found helpful along my heart dad journey, helping my kids to be happy and healthy, and somehow finding myself happy and healthy too:

 

Teach a new skill/game/trick

Teaching your kids new things is fun and exciting for them, but it also helps promote a strong bond and connection with you, which is far more important than the rules of any game. I still remember when each of my boys could dribble a basketball, hold scissors the correct way, and especially when they learned to swim. And we are working on shuffling a deck of cards now, along with reading Harry Potter.

 

Compare scars 

It’s important for your child to know that their scars don’t define who they are or who they will become, but it can also be something they have pride in.  Show off any scars you may have so they can see how their own scars might change over time.  When I was 12, I crashed my dirt bike and ended up with an emergency splenectomy and a scar the full length of my abdomen. This provided a great connection with my son after his first surgery and throughout his preschool-aged years.

 

Promote connections

Promote a connection to any other family members who have heart disease, even if it is long-distance. Find other heart kids/teens/young adults so they have role models for different stages of their lives.  Even though we know our kids are 1 in 100, at times they can surely feel like they are the only ones going through this. My father-in-law had open-heart surgery shortly after my youngest son’s Glenn surgery. It was very touching when he removed his shirt so that he could compare his scar to my son’s over video chat. Even though their grandparents live across the country, they are bonded through their hearts with Pops and through gardening with Mimi.

 

Manage medications

Know your child’s medications and dosing schedules inside out, backwards, and on little to no sleep.  Anytime there are changes to the medication schedule, be it sickness or higher doses as they grow, I build an Excel spreadsheet with the new dosing schedule.  It gets printed and taped to the kitchen counter so that I can mark off doses when given. My spreadsheet was super handy during the weeks following my son’s Fontan surgery when meds are given around the clock. Sure there are apps for this, but doing the spreadsheet was my way of being involved and connected.

 

Attend medical appointments

Attend every appointment that you can, no matter how routine it is or how quickly it goes. Each interaction with your child’s clinicians is an opportunity to advance your knowledge on how to best care for you child. I think we all worry about our CHD kids growing up and taking over their own care. Start young and show them what staying in care looks like, which means us dads need to go to our own doctors too!

 

Use your strengths

I am an analytical computer nerd with a passion for physics so I built the medication dosing spreadsheets and dove into the world of cardiology, until I learned everything that I could about my kids’ specific anatomy.  Everyone is talented or passionate about something.  The real trick is figuring out how to channel that energy into something that helps your family or the broader CHD community.

 

Have a strong partnership

This is probably one of the most important things heart dads can do.  The CHD journey is no joke, and having a solid relationship with your spouse, co-parent or significant other is crucial. Divorce rates among parents with medically-needy children are super high for many reasons, not the least is the incredible amount of stress. Whoever said that building a house together was a true test of a marriage, never had kids with CHD. Talk to your partner, listen to your partner, go to counseling separately or together if needed. You are a team.

 

Find other CHD dads

I have met a few other heart dads along this journey, from fatherhood veterans to fatherhood freshmen. There is a common bond between us because of CHD and no other dad has ever understood the gravity of seeing my son’s pink fingers and toes for the first time after Fontan surgery. Sometimes we don’t even talk about CHD or our kids but being together with those who truly get it is validating.

 

Take care of yourself

Let’s face it, the CHD journey is a marathon that never really ends.  If you don’t stop and decompress once in a while you are going to burn out.  Find a hobby. Exercise. See your doctor every year for a physical and actually tell them how you are doing (I am still working at this). Please, take it from my years of doing so, don’t compartmentalize everything until you explode.

 

Get involved with the CHD community

There are a lot of options once you are ready to take this step. Does your state have a PCHA chapter? Do other CHD organizations have a presence in your community? Do you have a skill you can lend to the broader CHD community? Will you send emails or make phone calls to your legislators, asking them to support key CHD measures? Can you visit Washington DC in February for lobby day? Do you want to just go bowling with other heart dads? Do it!

 

Heart dad is a designation that I doubt any of us asked for, but it is a badge we proudly wear. It says that we are fighting the CHD battle right alongside our kids, doing whatever it takes to keep them happy and healthy. Be proud of the work you are doing in your family. Tell people you are a heart dad, advanced dadding required.

 

Aaron Carpenter is the proud Heart Dad of two, a Software Engineer at University of Washington (Go Dawgs!), an alum of North Carolina State University (Go Wolfpack!), and master of the post-op medication spreadsheet. He routinely empties his vacation time bank at children’s hospital visits and enjoys running, hiking, and grilling up a good burger.

Aaron welcomes messages from Heart Dads and science enthusiasts everywhere at amcarp8@gmail.com.

Father’s Day – I See You, Heart Dad

Often times, Heart Dads do the behind the scenes work, the work that the world can’t see. Yet, in truth, their job as dad, their love, their encouragement  and concern doesn’t go unnoticed by the ones that matter. This week, Diana Schneider shares with us just how special a role her husband plays in their family and the life of their warrior, Danny. 

 

I see you, Heart Dad. You may not always wear your CHD heart on your sleeve, but I can see that too. I see the furrow in your brow as you’re researching our son’s diagnosis and treatment options. You wonder if you are doing enough to help him, if there’s more you could do for him. You try to imagine what the future holds for him and how you can make it better. I see you clench your jaw when the news anchor reports the latest flu statistics in our area and you glance anxiously at our boys, praying that somehow it spares everyone in our house. I see the tension in your shoulders when I need to take him to the emergency room. Again. You linger as you buckle him into his car seat, not wanting to let him go and yet wanting him to get there as quickly as possible at the same time. I know when I see you again there will be dark circles under your eyes because you can’t sleep well until he’s home safe with you again. Even with your anxieties and fears and without much sleep, you will be up the next morning to feed and dress our other two sons and take them to school and daycare. You will be mom and dad to them until Danny and I come back home, and I love that I never have to worry about them because it’s a job you do so well.

I see you swallow your concerns and let Danny be like every other little boy his age, running, climbing, and jumping off everything in sight. You roughhouse with him and his brothers, you chase him and tickle him until he squeals, planting big dinosaur kisses ever so skillfully on his belly without disturbing his G-tube. You never tell him he can’t try something because of his heart. And you don’t use it as an excuse to spoil him either. I see you discipline him and hold him to the same standards of behavior we set for his brothers when it would be much easier to let pity and guilt over everything he’s gone through get the best of you. But you know you wouldn’t be doing him any favors in the long run.

I feel like the people who know the story of our son’s journey don’t always see or appreciate how much of his success is from you. When our friends and family ask how Danny is doing you tell them I take him to weekly appointments with the feeding specialist and how he ate his first slice of pizza. But you don’t tell them you made the pizza from scratch (thin crust, so it’s easier to chew) and let him help you make it so he could experience food as a fun, not just therapy. You tell them I take him to see a speech therapist every week to get his language development on track so he can start school next year. But you don’t tell them how many books you read to him or how many flashcards you practice together each day when you get home from work. You tell them he no longer has a gross motor delay and doesn’t see a physical therapist any more, but you don’t tell them you built him his own platform swing to work on his balance at home. You tell them about current CHD research and what it could mean for Danny, but you don’t tell anyone that you went to our nation’s capital to educate legislators and push for more research funding.

I see the way becoming a Heart Dad has molded you into an even more remarkable father than you already were. It’s made you someone I could never have imagined when we were dating in high school, and your biggest concern in life was how to start a food fight without getting suspended. As it turns out, you weren’t very good at that. But you are the most incredible Heart Dad. It has shaken you to the core, and you have put the pieces back together even better than they were before. It has made you more vulnerable, but stronger. It has made you more serious, but you’ve retained your sense of humor. You live your life differently now, taking little for granted and stopping to enjoy the small things. You plan for the future, but cherish each day knowing that tomorrow isn’t guaranteed. I’ve watched the man who can fix anything around the house struggle to accept he can’t fix his son’s heart, but instead of buckling under the stress and fear you’ve allowed it to shape you into a better husband and father than you already were. You’ve managed to find a way to thrive under the burden of being a Heart Dad and because of that, because of you, Danny is thriving too.

Thank you for appreciating how hard I work to take care of our children. But the next time someone asks how Danny is doing, I hope you will remember to take your credit where it is due. To you and all the wonderful Heart Dads out there, have a Happy Father’s Day knowing how much we love and appreciate you the other 364 days of the year as well.

 

Diana Schneider is the lucky wife of an amazing Heart Dad and mom of three wild little boys. They live near Ann Arbor, Michigan and thankfully, Mott Children’s Hospital.

 

Father’s Day – Amit’s Story

Being a first time father, while exciting, can be stressful on its own. Add to it the prospect of your child being born with multiple heart defects, and the excitement over your first child turns to fear. This week, Amit Shah shares his story, learning his son’s diagnosis and how it has changed the meaning of Father’s Day.

 

 

 

 

To help people understand what Father’s Day means to me as a heart dad I have to give a little history of our journey.

We were so happy when we found out we were pregnant.  We were excited about this amazing new step in our lives.  We were thinking about how happy our family and friends would be, what silly Halloween costumes we would wear to announce baby Sai, the fun we would have looking for nursery items & planning a baby shower.  Alas that fairytale was not meant to be our journey.

At my wife’s 12-week ultrasound/OB appointment we had been told that there could be a potential for something to be wrong with our baby’s heart, but there was no need to worry, we just needed to get a precautionary echo.  A few weeks later at our 1st fetal echo we were told Sai definitely had an issue with the right side of his heart specifically the tricuspid valve.  The pit of my stomach dropped out from under me.  I started thinking this was not the way it was supposed to be, we are supposed to be celebrating.   This cannot be right, the doctor made a mistake, everything will be OK.  At that time little did I realize how our fetal cardiology appointments would get progressively worse, turns out things were not going to be OK.

At what I think was the 4th fetal echo, the tech and the cardiologist spent what felt like hours taking scan after scan as I held my wife’s hand.  Something felt off. When the cardiologist said we needed to find a conference room, I knew the news was not going to be good, but I was not prepared for what we were going to hear.  Our heart journey with Sai started prenatally with a diagnosis of tricuspid stenosis, progressed to a hypoplastic right heart, and then added an enlarged left atrium & ventricle with mitral valve complications, arrhythmia, and slight fluid buildup around his heart.  My head was spinning, and I felt sick as we got the news   At that point I had minimal idea what all of it meant.  We were prepared for HRHS and knew what we needed to do, but this was too much. I was just overwhelmed with sadness, anger, and wanted answers.  It all felt unfair.  A week later, on December 14th 2016 (the date is etched in

my mind), we had a more detailed confirmation fetal echo appointment with the hospital’s super tech to make sure nothing had been misdiagnosed.  Unfortunately, no mistakes were made in Sai’s diagnosis.  Due to all the complications discovered prenatally Sai had a poor prognosis (I hate that term), there was a very real likelihood that he may not make it.  If he did get to term we would have a very complicated situation since both sides of his heart had issues, we needed to prepare for him to pass or for a very a long road filled with surgeries and no guarantees.  We left the hospital that day and cried the hour back home.  We decided to get a second opinion 2 weeks later from another leading hospital with an excellent pediatric heart program, and they confirmed the diagnosis but with a grimmer prognosis.  Devastation is what I felt, when I was looking for hope.

We had spent the better part of my wife’s pregnancy emotionally drained and exhausted. I hated the fetal cardiology appointments and MFM appointments, I was pretty sure we would never get good news.   I tried to attend as many Doctor’s appointments as I could and started the great learning process of everything that was wrong with Sai’s heart.  I could get information on individual pieces but nothing on all of them together.  I normally think of myself as a strong person, but I was lost in my own head, I did not have any answers, I could not help Sai, and I did not know what to do to help my wife.  I can never imagine what she was going through, but she is a much stronger soul than I am.  We did our best to support one another through those months, but they were really dark for me.  At times my wife and I were mechanical, at times impersonal, and times overburdened with anxiety.  We were going to do everything

in our power to save Sai, but we knew the odds were stacked heavily against us.  From December 15th, 2016 until he was born, after breakfast, lunch, and dinner I would text or call to see if Sai had moved. This was a difficult but necessary routine.  Every time my wife said yes, we were closer to him getting to term, and I could rest easy for 4-6 hours.

Outside of my wife and some support groups, I did not know who to talk to about Sai’s situation especially

as it progressed.  How do you tell someone that your son potentially may not make it?  When people would ask how the pregnancy was going I usually said everything was great with a smile.  Privately with family and a few close friends I would breakdown at the thought of losing him.  In my mind I was not a strong father or husband, I was supposed to fix things and I could fix nothing.

Turns out you can only keep saying everything is “OK” or “great” for so long.  As we reached the 3rd trimester many friends and family started asking about the baby shower so that they could make plans.  The 1st five times people asked I said we were working on it, and after the next 5 times people asked we concluded that we need to send a communication explaining the situation.  This was one of the hardest e-mails I have written in my life.  There was not going to be a baby shower, and we need all the thoughts, prayers and good energy people could send our way.  I have read this e-mail many times, and still read it from time to time.  The goal has always been that I not to tear up, so far I have failed miserably.  As it turned out I needed to write that e-mail, I needed to let people know what was going on and share.  The e-mail updates helped me cope and express myself.  We would send an e-mail update out about every 2 weeks and keep people informed on big milestones.

As we approached Sai’s due date, we did get some positive news.  While things were still very serious, it seemed that Sai’s heart was repairing itself, and there had been no arrhythmia for 4 weeks, all amazing

signs that Sai was fighting to stay alive.  During this time we became aware of a new potential defect, Coarctation of the Aorta (CoA).  The potential CoA and the left side of his heart (including the mitral valve) turned into the most immediate concerns for the doctors.

The day he was born was one of the most amazing and scariest days in my life.  We did not get to hold him. I got 3 pictures before a team whisked him away to the NICU.  We were expecting surgery, and for 5 days we waited for next steps.  We held him, hugged him, and gave him as much love as we could, navigating wires, tubes and many annoying alarms.  Not being sure what would happen, we spent hour upon hour in the NICU, so much so, that the nurses said we need to take a break; they would call if there is an issue.  Five days and a lot of grey hairs later, we were told that Sai would actually not need surgery immediately.  Turns out the Aorta was actually functioning fine (branching in the scans had thrown

the doctor’s off) and his mitral valve was functional enough that we could wait and see.  While he had pulmonary hypertension and moderate/severe mitral valve regurgitation, we would be able to treat both with medicine. He was (and still is) a high risk candidate for surgery, and they would not do surgery unless it was absolutely necessary.  After 11 days in the NICU we could go home with a lot of follow up doctor’s visits.  It was amazing to bring him home and show him his new room.

So this brings us to Father’s Day.  We never really celebrated Father’s day growing up (for a number of different reasons).  I was not very close to my dad or grandfathers, and I vowed to myself that I was going to change that if I had children.  I wanted to show Sai he is surrounded by love. This became even more of my mission as we have progressed through this journey.

Father’s Day last year was an amazingly special day where my wife and I got to celebrate with our miracle.  It was a day filled with a lot of reflection for me, a day filled with tremendous joy and sadness.  Sai was about 10 weeks old at that point, and all I could think about was that I was happy he was alive, not in the hospital, did not need surgery immediately, and was actually eating.  I remember thinking how sad I would be if he wasn’t here.  There was something amazing about holding him in my arms as he slept and as I thought through the past year.

This year’s Father’s Day it is going to be different.  I am not going to spend time thinking about how Sai might not have been here but spend time celebrating him and what he has overcome.  Being a heart dad has taught me a lot.  This year I am not going to reflect on any sadness.  I am going to concentrate on how we can make a positive difference.  I am going to reflect on how Sai has changed our lives for the better and made us better people.  I believe that everything happens for a reason and that Sai is right where he is supposed to be (with us). Sai has shown us how to be strong, persevere, and never give up.  This year, even though he will fight with all of his might (he is quite independent), I want to hold him, hug him, and have him sleep on my shoulder.  I want to show him how much we love him and that we will do anything and everything to make sure he is OK.

My wife and I are forever changed as people.  We are humbled at the strength of heart kids and parents.  Through all this we have learned to not take life for granted, appreciate everything around us, and that miracles do happen.  We also realized that we are not alone and that there is so much help and support available.  I am not sure we would have gotten through this without the help from our family, friends, and support groups.  I never understood what people meant when they said that heart warriors are different, don’t underestimate them or give up on them, but now I do.

When we met with the surgeon prenatally he stated one thing that has really resonated with me in recent months.  He stated, “If he[Sai] is going to keep fighting, we need to fight for him”.  My wife and I have tried to expand on this and broaden it, so that we fight for all heart warriors.  Through this process we have met so many amazing kids and parents that have gone through or are going through so much more than we did.  My hope is that sharing our story helps another heart dad (or mom) to know that they are not alone, that there is support and help.  You may feel lost and alone, but there is a huge heart family out here that understands what you are going through.

Today Sai is doing incredibly well, even the doctors are amazed.  As we continue to educate ourselves and ask our doctors more specific questions, we have learned that Sai’s heart anatomy is pretty unique but functioning much better than expected.  It is scary to me that medical science does not have answers on why his heart defects occurred, why he is doing so well, or how he will do in the future.  I fear what the future may bring; I have so many thoughts that go through my head.  I don’t know if I am ready to hear the words “it is time,” but I know that we will do everything in our power to fight for Sai and that we are surrounded by people who are also fighting with us.

Happy Father’s Day to all the heart dads out there, remember we too have a voice.

 

 

 

Amit Shah is a husband and a father of a headstrong son, Sai, who has multiple heart defects.  He is pretty convinced that Sai is trying to take over the world.  Amit is trying to navigate life as a new parent and a child with CHDs.  He hopes through spreading awareness and knowledge of CHD that doctors and researchers can eventually find a cure.

Father’s Day – Joe’s Dad

In May, PCHA honored Heart Moms for Mother’s Day. This month, we’re taking time to shine a light on the great Heart Dads out there, who conquer CHD along side us and are often unsung in the fight. This week, Joe Valente, an adult CHD patient, thanks his dad for the sacrifices he made a long the way and talks about why sometimes men seem to be in the background when it comes to  the CHD Family journey.

 

My father used to have a fond place for box kites and I remember many a summer being dragged across the windy beaches of Northern California by his kites.

As I sit hear with my next chapter in my CHD journey unfolding I am reminded of all that has been sacrificed to get me here and as Father’s Day is approaching it is hard to not think of all the CHD dads that make this world go around including my own. The world of Congenital Heart Disease is in a rapid state of flux. Since the day I was born over 36 years ago survival rates for critical congenital heart defects have improved beyond belief, but maybe more importantly the community of patients and parents that are able to connect through the internet and organizations like the PCHA have drastically changed the knowledge and support for everyone affected by CHD.

Being a male in the CHD world is difficult, there are not many emotional resources for the men that need support, the fathers who are helping their child fight, or those that are grieving a loss. Maybe it is our own doing and what society expects from us, but it is often a lonely road to walk. I enjoy seeing the fathers that are public about their battles and the men that share their journey with CHD with the world. So, while so much has changed the men are often stuck in yesteryear as they are expected to be strong through all else and have little escape or resources to coupe with daily struggles that accompany CHD.

As I was going through some childhood belongings the other day I found an old guide to CHD from the American Heart Association, copyrighted 1978. It is quite an enlightenment to read, as it was the only real resource that my parents had outside of the hospital. In this information era it feels like reading a tri-fold brochure when you want an encyclopedia. It is a good reminder for all of us fighting for more to not forget to be thankful of how far we have come.

As most fathers mine was observing my birth but for him it was in the same hospital that he had already delivered so many babies as an OBGYN. So, when I was delivered and was extremely cyanotic I wonder at what point he really knew. I know my mother tells the story of the pediatrician telling her I was being transported to UCSF and to call the priest. But I know my father knew before that—maybe from the moment he saw me—or was he blinded by a fathers love like so many parents who don’t see what may appear as obvious looking back?

I was blessed that my father was one of my biggest advocates when I was young, being a doctor he was knowledgeable enough to know when things were not right. I can say without hesitation that he saved my life. I know his grief was significant as anyone that was there would tell you he could barely walk into the hospital to find me after my transport. And when I was not on the floor they thought they assumed the worst. Like so many father’s I am not sure who was there for him, of course my mother and family, but who was his strength? Maybe all he needed for his strength was me to be there and to keep fighting.

My dad never let his medical knowledge and any fear of looking like a dumb parent get in the way of following his gut. When I was 9 months old one week after getting a the “see you in a few months” clearance from cardiology I began to go downhill. My father new something wasn’t right and immediately called my cardiologist. As my pediatric cardiologist still does, and I believe any good doctor should, he listened to him told them to come down as soon as they could. Upon setting eyes on me my cardiologist turned pale. He had never seen a baby decline so fast, he had only seen me a week before and I was “healthy.”

My father didn’t stop there when the surgeon came and gave the consult on a Friday afternoon and told my parents he would operate on Monday my father told him I didn’t have until Monday. The surgeon was adamant that I would be fine and that when he got back from his weekend vacation he would do the surgery. That wasn’t good enough, so my dad kept pushing finally he agreed to operate same day. After the surgery, the surgeon came out of the operating asking my father how he knew, he questioned how many hours I had left, not days, as I had formed an aneurysm in my trans annular patch that was placed when I was just 2 days old, and it was about to rupture.

As I have grown into a man, I think of all the nights my father was out delivering babies and how at 76 he still works 4-5 days a week. Not much has changed in my 36 years, except now I am the one in charge of my care. The lessons my parents taught me are what has led to me to search for a life of meaning. Not only for me but for everyone I love. I have had many moments in my life when I was required to trust my gut, and I have never seconded guessed it, because I learned at a young age the significance of doing so. I will always appreciate the medical professionals who take a pause and listen when I say something isn’t right.

I know that fathers may often seem hidden in the world of chronic illness and CHD, but it is not representative of their role. Many are at home and work, keeping the rest of the world moving while we fight our battles in hospitals and doctor offices. Many are out there advocating for us. They may not be the faces on our Facebook pages, but we know what they do and have done for us, and we are forever grateful. Maybe one day it will be the posh thing for dads to wear their emotions on their sleeve for the world to see, but until that day we must not forget of everything they contribute to us and our families. Regardless of their fame or the lack thereof we know their love is unwavering.

So, when I say:

The twine on your kite is as long as you want it to be. Always set it loose and reach for the blue skies. Let it fly high in the wind. If a breeze catches you let it pull you to where you were meant to be. Never give up on life. Fly free and you will be amazed at what you can be.

I think of my father and being pulled across the beach as I look up for all that can be. A happy Father’s Day to my dad and all the CHD dads out there that mean so much to us and our families.

 

Joe was born with Tetralogy of Fallot. He required his first open heart surgery at 54 hours old and suffered a stroke after surgery. He has now had four open heart surgeries, the last two days before his 30th birthday. He has struggled with PTSD for most of his life and believes a strong mind and building a team with a roster full of supporters is the key to successfully living with a chronic illness. He is a Board Certified Patient Advocate for families, children, and adults with congenital heart disease—helping them to navigate the emotions, diagnoses, and challenges they face in finding and understanding appropriate CHD care.

 

Adult Patient Experiences – Scarred

Uncertainty and life challenges do not disappear with age. New phases of life, new experiences, instead,  bring different ones our way, as Medical Student, Joe Burns, knows. Here, he shares with us a shift that happened in his life, after surgery as an adult due to his CHD. His story emphasizes the importance of  support for patients through the lifespan and the role adult patients can play for transitioning patients.

“Did you have heart surgery?”

The shy seventeen-year-old girl’s question caught me completely off guard.

Her name was Sarah. Everything about her seemed perfectly organized–her long black braid falling ruler-straight between her shoulders, her folder with all of its documents sorted by date, her matching shoes and shirt, her entire wardrobe without a single wrinkle.

Her health was a bit less perfect. She’d been born with an atrial septal defect (ASD)–a hole in the wall separating the heart’s right and left chambers. Tomorrow she was to have an operation to repair the hole, so she’d come in today, accompanied by her parents and brother, to sign the presurgical consent forms.

Vivian, the nurse, had given Sarah informational materials about her condition and the operation. With an air of poised self-possession, Sarah had read everything, asked appropriate questions and completed the consent form. She seemed quite prepared for tomorrow’s procedure.

Meanwhile, I’d been standing silently in a corner. As a third-year medical student doing my surgery clerkship, I was here to observe the interview.

Up to this point, Sarah had directed her attention to Vivian. Now, as she peered at me over her glasses, awaiting my answer, I felt flustered–and keenly aware of the two inches of scar peeking out above the V-neck of my scrubs.

I hadn’t expected to talk with her, much less to divulge my health history. Still, I thought, it’s only fair to share it; she’s accepted my being here while her own health was discussed.

“Yes, I did,” I said. “I had surgery about two years ago to replace one of the valves in my heart.”

Her eyes widened, and her features softened into a smile. All at once, she seemed much younger.

She studied the top of my scar (which is nearly an inch wide and runs down to my breastbone), and her expression turned to one of concern. I could guess what she was thinking.

“Don’t worry,” I said. “Your incision won’t be as long as mine.”

Her parents chimed in.

“You’re in medical school? How was your recovery? How do you feel now?”

Answering their questions, I relived my two-month recovery period. As I’d worked to regain my strength and make the transition to medical school, I’d experienced a wide range of emotions, from wallowing self-pity to blazing triumph. Some days, I wanted nothing more than to sleep and be alone; others, I would run for miles. My prevailing thought throughout those months, though, was the loss of my privacy.

Up to that point in my life, my illness had been invisible to others. I’d checked in with my pediatric cardiologist every six months, but otherwise I felt normal.

After the operation, there was no longer any hiding: Wherever I went, my body broadcast my health history. I didn’t sign a release form permitting all of the stares I got at the beach or the pool; I didn’t consent to the uninvited queries, the pointing, the whispers–but nonetheless, they became a part of my life.

Talking with Sarah’s parents, I remembered, too, how stressful my own parents had found my surgery.

As anxious as her parents feel, I reflected, it must be comforting for them to see that she can look forward to a normal future.

In that moment, I became aware of what a strong bond Sarah’s question had forged between us. Having endured the countless echocardiograms, exercise stress tests, Holter monitors and EKGs that congenital heart disease (CHD) demands, we two shared a common experience and knowledge that no one else in the room could fully understand.

Soon, I reflected, she too will bear a physical reminder of her journey with CHD.

Throughout the rest of the visit, Sarah looked to me, literally, to confirm the information Vivian was giving her. It was as though my personal experience meant more to her than any medical data, however reliable.

When Vivian said, “The day after your procedure, you’ll be able to stand up and walk around,” Sarah glanced at me, and I nodded.

After several more of these silent consultations, Vivian actively involved me in the conversation.

“After you go home, you’ll be able to do everything you normally would, but it will take time to regain your stamina,” she said. “Joe, would you agree?”

“I agree completely. If you commit to your rehabilitation, you’ll feel better than ever after only a few weeks,” I answered, marveling at how my experiences of patienthood and vulnerability were empowering me to play an active role as Sarah’s caregiver.

The visit drew to a close, and the family prepared to go; we all shook hands. Sarah was the last to leave. Reaching up, she put her arms around my neck and hugged me.

“Thank you so much for being here today,” she whispered.

I feel grateful to have had the chance to share my story with Sarah. Our encounter reminded me that it’s not only pharmacology and procedures that make a difference in medicine; it’s also the relationships we forge during our struggles, and the bonds we share with those who are traveling similar roads.

I realize that my scar will always be a part of my identity as a physician and healer. It’s a doorway to openness with my colleagues and patients. I can never aspire to the image of the all-powerful, invulnerable physician. My scar is my humanity. There’s no escaping it; the evidence is etched upon my body.

Joseph Burns is a medical student at the Herbert Wertheim College of Medicine at Florida International University, in Miami. A native of Orlando, he is passionate about the arts and community engagement. His interests include congenital heart disease and American Indian health, and he hopes to pursue a career in adult congenital cardiology. His writing has appeared in Reflective MedEd. “During my recovery from heart surgery in the summer of 2015, I realized the importance of reflection in my healing. Though there have been times in which I have felt embarrassed about my scar, more often than not it’s a badge of honor, of survival. It’s an open door for advocacy and for connection with those who have endured similar battles.”

This piece was was also published  at https://pulsevoices.org/index.php/pulse-stories/1293-scarred

Mother’s Day – Sarah’s Story

We don’t always celebrate Mother’s Day with a tangible gift. Sometimes the day serves as a reminder of the blessings that Motherhood is on its own. Below, Sarah shares her story about what Motherhood had taught her.

There are so many valuable life lessons I have learned in my 8.5 years as a mother.  Not only have I learned more than I ever imagined, I believe the discoveries are unique to each mother.  For instance, I have realized and been touched by various

events that may not impact some mothers as they do for others.  This is what I believe to be a special component of motherhood.

Mother’s Day has become even more special to me since the birth of our 22-month old heart warrior.  While every day is a joy with both of my children, Mother’s Day is an extra reminder of how fortunate and blessed to have two children I learn so much from on a regular basis.  I truly take no day for granted.  While our journey is full of uncertainty raising a heart child, I treasure every moment.

If I had known what I may have experienced when becoming a parent prior to motherhood, I may not have ever become a mother!  My life as a mother has been very eventful; both full of joys and many hardships – some of which many mothers never experience.  However, some of these difficult times, such as the diagnosis and journey with our son’s complex heart condition have made me a better and stronger mother and person.  I have since realized more so now than ever, what is important in life – what is needed and what can be lived without.  Less is truly more.

Motherhood, has blessed me in more ways than I could ever describe and even more so since I became a heart mom.  While the times in our journey have not always been good; they have led to where I am today and I am proud to have two loving, caring, courageous, and energetic boys who remind me what life is all about.

Each year, I look forward to Mother’s Day and am thankful I am a mother of two remarkable boys who remind me of how lucky I am, especially our little miracle child and warrior.  Motherhood has helped me grow as a person and professional, for which I am so grateful.

 

The author, Sarah Diamond, has a passion for the non-profit sector, working with volunteers, writing, and educating.  She holds a Doctor of Education in Educational Leadership and works in non-profit management.

In 2016, she partnered with two colleagues to form a non-profit, where she serves as the President and CEO of the organization, which helps families experiencing medical conditions.

She and her husband have two sons and enjoy spending time together outside doing many activities like riding horses, running, fishing, and gardening.

 

 

Mother’s Day – A Grieving Mother

Most of us spend Mother’s Day with our children, but for Kristin Burns, who lost her son to CHD, the day means something different. Read her story below. 

I remember the day that I become a part of the CHD community. It was August 18th, 2016. Since that day, my life has been changed forever. I have learned so much, and I have grown exponentially as a person. My first and only son, Brycen Alvin Burns, was diagnosed with CHD at 20 weeks gestation. From that day forward, he fought for his life every single day. Watching Brycen fight for his life, taught me so much as a mom and as a person. He taught me how to be strong, and how to fight with all my heart and never give up. He taught me how to be an advocate for him, and how to always trust a mother’s intuition, as its almost always right. He also taught me how to love with every ounce of my being, with the knowledge that life and death hang in the balance, and that every day we got with him was a gift. After 229 days here on Earth, Brycen was taken from us. He passed away as a result of complications from his heart defects and other medical issues. On July 29, 2017 I became a childless Mother, and the Mother of a Heart Angel. Being a childless Mother is not how I thought I would be spending Mother’s Day this year.

 

My first Mother’s Day was spent in the ICU at Children’s Hospital and Medical Center in Omaha. Brycen was recovering from 1 open-heart surgery, and 3 additional open chest surgeries, including a very risky tracheal reconstruction. Amid the humming of medication pumps, and the beeping monitors, we still celebrated the holiday. Brycen was battling withdrawals, but I was just so thankful that he was still here with us, that I didn’t care about the struggles. I remember trying to make the staple “First Mother’s Day” crafts with Brycen and my husband Jeremy. I remember laughing at how imperfectly perfect they were, and I remember thinking that there was always next year to make better ones. Little did I know what the future was going to have in store.

 

This year, everything is different. I no longer have the tangible and physical evidence that shows I am a mom. I will always be Brycen’s Mom, but now that he is no longer with me, it is hard to hold onto that identity. In fact, sometimes I like to go back to the hospital, because that is the only place that I am still referred to as Brycen’s Mom. But most times, I don’t even feel like a Mom anymore, because I don’t get to do the things that mom’s get to do. I don’t get to change diapers. I don’t get to play with my child. I don’t get to tell him to stop climbing on everything. I don’t get to do anything that mom’s get to do. Instead, I get to visit my son’s grave. I get to talk to him and call out to him in my prayers. And I get to tell people his story about how hard he fought from the day he was conceived, up until the day he passed away. These are the things that I get to do as a childless Mother on Mother’s Day.

 

Once you lose a child, the holidays are tough. Mother’s Day will be another “first holiday” without Brycen, and I can only imagine how difficult it will be. Social Media will be flooded with family pictures, pictures of beautiful flowers and of handmade gifts from children to their Mothers. And people will be posting about how great their Mother’s Day was. But then, there are loss moms like me. On Mother’s Day, we don’t get to wake up to any of that. Instead, everyday we wake up, we wake up to the same living nightmare that our child is gone, and we get to relive that moment, over and over again. And just like every other day after loss, we will wake up, put on our “faces” and put one foot in front of the other. This is our new world; because our “normal” died the day we lost our child. We have become experts at carrying our grief with us, each and every day. We have become experts at hiding our grief behind love and joy and even behind pain and sadness. We have had to become experts at this, because grief never goes away. Grief is forever, and lifelong, just like our love for our child. Grief is always there, but we just learn to push through it.

 

I personally have mixed emotions about Mother’s Day now. I find myself wondering if I should even be celebrated, as I no longer have my son with me physically. But then again, I am Brycen’s mom, and no one can ever take that away from me. I guess my wishes for Mother’s Day are simple, and they include all of the loss moms/bereaved moms in the world. Please don’t forget about us. Please don’t avoid us, and please don’t avoid saying our child’s name. They existed and will always be our children. But please don’t be offended if we distance ourselves for a little while to collect our emotions. Please be patient with us, and know that we are hurting. While we watch you play with and hug your children, our arms and our hearts are aching to hold our children just one more time. On Mother’s Day we will celebrate your joy with you, but we will be experiencing pain. A pain that is unimaginable. So please don’t forget about us.

 

To all of the mom’s that have lost a child, or multiple children, this is for you. This is to show you that you are not alone on Mother’s day, or any other day. We are all in this together. We are all members of this club that we never asked to be in. Just know that it’s okay, to not be okay. It’s okay to distance yourself, and to take time for you. Your loved ones will understand. Grieving mothers are some of the strongest women in the world, and so we celebrate you on Mother’s Day, and every other day! From one loss mom to another, I see you and I understand. Happy Mother’s Day!

 

 

 

Kristin Burns is a 30 year old Heart Angel Mom, from Council Bluffs, IA. She is a Physical Therapist Assistant and has been married to her husband Jeremy for 3 years. Their son Brycen was diagnosed in utero with several medical issues including Congenital Heart Defects. Due to Brycen missing his left lung, seeing his entire heart anatomy was difficult due to positioning, and they were given several different diagnoses. After his first open-heart surgery his full diagnosis was VSD, ASD, Overriding Aorta, Hypertrophic Right Ventricle, Double Aortic Arch and a Vascular Ring. Since becoming a part of the CHD community back in August of 2016, at Brycen’s first diagnosis, Kristin and her husband Jeremy have been strong advocates for CHD research and raising CHD awareness. With the help of another Heart Angel Mom, Kristin is helping start a non-profit organization to help other CHD families at the local Children’s Hospital and Medical Center in Omaha. They are also helping start support groups for inpatient families and also for bereaved families.

Beyond the Heart – Pediatric Pulmonary Complications

In a follow up to PCHA’s series on complications resulting from CHD, Dr. Nidhy Varghese, of Texas Children’s, adds insight to the pulmonary implications in patients affected by Congenital Heart Disease. 

 

Pediatric Pulmonary Complications of Congenital Heart Disease
Dr. Nidhy Varghese, pediatric pulmonologist at Texas Children’s

Congenital heart disease is the most common birth defect in the world, affecting the hearts of thousands of children each year. However, congenital heart disease (CHD) affects more than just the heart. Abnormal cardiac development can have significant effects on other organ systems such as the lungs. The lungs are directly connected to the heart and they share a unique relationship of development and physiology. Effects of CHD can be seen in lung growth, in anatomy and in lung function. Although these can be considered as prenatal and postnatal consequences, the pulmonary complications of congenital heart disease represent a spectrum of consequences.

What is the function of the lungs?

The lungs are the gas exchanger for the body. A multilevel organization of airways present oxygen and remove carbon dioxide through contact with a rich network of blood vessels in the lungs. The lungs are connected to the heart through the pulmonary artery and the pulmonary veins. They’re located in the chest, on the sides of heart.

Prenatal Effects

The lungs are made up of conducting airways, air sacs (known as alveoli) and blood vessels.  These structures begin to form by the end of the first month of embryonic development.  The development of the vascular system within the lungs and the branching of alveoli are directly related to circulation.  Abnormalities in blood flow due to CHD can cause alterations in development of the lungs’ vascular system (arteries, capillaries and veins) and the division of the airspaces into the millions of alveoli needed for adequate gas exchange. This results in simplification of the alveolar and vascular networks, which can produce symptoms of chronic lung disease and pulmonary hypertension.

Postnatal Effects

In the setting of CHD, the flow of blood within the heart and through the blood vessels is abnormal.  Different parts of the heart or the blood vessels themselves may become enlarged or may be atypically located within the chest, causing compression on the nearby lungs and airways. CHD examples in which this can be seen are anomalous innominate artery and conditions causing cardiomegaly (an enlarged heart). Compression can cause respiratory distress, stridor, wheezing and recurrent areas of lung collapse.

In certain types of CHD, there may be increased blood flow to/through the lungs (for example, patent ductus arteriosus, ventricular septal defect).  The arterial system in the lungs is not used to receiving such large amounts of blood flow.  Subsequently, the pulmonary blood vessels can become scarred and narrowed. While this effectively reduces the flow through the lungs, the pressure in the lungs can increase: a condition known as pulmonary hypertension.

Pulmonary edema is another complication of CHD. This is a condition in which high blood pressure occurs in the vessels close to the alveoli. As the pressure rises, water diffuses from the blood into the airspaces. The effect on gas exchange can be variable. Pulmonary edema is more likely in conditions such as pulmonary vein stenosis and mitral valve abnormalities.

In summary, CHD can cause many abnormalities in the lungs.  The respiratory system in children with CHD is more likely to be simplified which may affect gas exchange.  Certain types of CHD can cause further symptoms such as airway compression, pulmonary hypertension and pulmonary edema.  Pulmonary complications in children with CHD are part of a spectrum and can vary significantly in each child. It is therefore important that children with CHD undergo respiratory assessment for early detection of these consequences.

 

As a pediatric pulmonologist, Dr. Nidhy P. Varghese’s specific area of interest is pulmonary hypertension and pulmonary complications of sickle cell disease. She enjoys working closely with families and colleagues to deliver the best care possible to care for children, so that they may thrive. She earned her medical degree from Albany Medical College, completed her pediatrics residency at New York University School of Medicine and her pediatric pulmonary fellowship at Baylor College of Medicine.