We Make A Good Team

Yesterday our families took time to honor and show our appreciation for our Dads. In our latest blog, Heart Mom, Roxanne Bejarano, shares with us what her husband, Angel, means to her and their family.

My husband is heart dad, Angel Bejarano.

I could not have gone through our experience without the support and guidance from my best friend-my husband. We really made a great team when we found out our son Miles’ heart condition. We definitely leaned on each other and developed a rhythm that nobody else understood. We didn’t get in each other’s way, and both knew we wanted to be with our son 24:7. We never left the hospital, until after his heart transplant surgery. We knew the hard part was over, but that a whole new life was about to begin.

Being in the hospital, waiting for a heart donor, questioning the doctors, and trying to rationalize why our son was in heart failure were definitely stressful times for us to overcome as husband and wife. We’ve been friends for over 20 years, and our friendship became much stronger after going through this experience.

We understood each other and he gave me the courage to know “it was not my fault” – it wasn’t anyone’s fault. The hardest thing about being a mother,  for me, was that I brought a sick child into this world, but knowing my husband will stand by me and not blame me is the one thing that helped me cope through all this.

We learned very quickly that we were in our own world. Nobody understood what we were going through; we were alone. It took our love, strength, and faith to enter into this new parenting mode, and we discovered that nothing else matters but Miles’ health.

Thank you Angel for being my angel. Love you so much!

 

Roxanne Bejarano was raised on the north side of Chicago and is a huge Cubs fan. After meeting Angel in grade school, she and her husband have been friends for more than 20 years and married for six. Roxanne is medical coder for Northwestern Memorial Hospital, and has two sons, Miles and Logan. Her days are filled with caring for her boys and staying on top of Miles’ medical needs, including medications, doctor visits, and speech therapy. When you’re a heart parent, the only people who understand what you’re going through are those that have been in the same situation; that’s why Roxanne and her husband love the heart community and PCHA.

The Immense Sky: Space to Deal, Space to Feel

Our Heart Dad Series continues for the second week of June. Here Margaret King shares how her husband Shawn’s reaction to their journey as heart parents differed from her own.  

As I sit here writing about heart dads, I realize that it’s impossible to finish this piece without my husband, Shawn. So, we are camped out on the patio of a local coffee shop on one of those rare, picture-perfect Wisconsin summer evenings that seem to go on forever, talking about our different ways of handling this journey over the 9+ years now since we heard the news of our son’s HLHS at our 20-week ultrasound.

How can two people walk the same road and yet have two very different experiences? It’s humbling to realize that our own perceptions of the same events can be wildly different, no matter how intimate the relationship. Imagine going on vacation to hike in the Rockies with your spouse, soul mate, and/or dearest friend, and realizing at the end of two weeks of backpacking, one of you had noticed every small detail about the flora and fauna you’d passed, whereas the other had focused on studying map coordinates, local lore, and the geological layers of the mountains.

Would you feel like you were speaking separate languages, and find the other person’s view of the trip incomprehensible? Or would you cherish each other’s interests and strengths, and feel your lives were richer for sharing your different scopes of knowledge with each other?

That’s how the marriage of two heart parents can be. Shawn and I had to find a balancing act, a way to play off each other’s different strengths and try to compensate for our each other’s weaknesses, to avoid the utter exhaustion of duplicating the hard work of raising a little person with a single heart ventricle. In that spirit, we thought it would be best to have a “his & hers” dialogue about our different experiences as two heart parents sharing the same child.

Shawn: You’re really good at handling all the little day-to-day stuff that drives me insane. It’s the endless tiny glitches of everyday problems that wear me down.

Margaret: Yeah, and you’re good with the really big things. I can’t handle the big upsets. I kind of tend to fall apart with those.

Shawn: My strong point isn’t networking or making connections with other heart parents.

Margaret: Whereas I’ve met a lot of people and made a lot of great friends on this journey. I couldn’t do it without them.

Shawn: You stay up to date on the current research.

Margaret: You focus a lot more on creating a sense of normality, while I can get into these funks where I dwell too much on the medical stuff. But, I don’t mind dealing with the school and handling all the teacher meetings and IEP procedures.

Shawn: No doubt!

Margaret: I feel I’ve had a lot more ups and downs and this journey, and you’ve been more of the steady one.

Shawn: The heart condition is an ever-present background hum for me, but I try to keep it in its place. But, it never goes away.

Shawn & Margaret: We both think that it’s ok to deal with the realities of raising a heart kid in different ways. Whether you’re married or a single parent, sometimes the complexities and circumstances of raising a heart child are far beyond what any one person can be reasonably expected to handle. As heart parents, we all need to recognize our own areas of strength and build on these, while relying on others to help with some of the areas where we aren’t so strong. In a heart parent relationship, it’s important to give each other the space to deal and process in our own ways, because two people may handle the same situation very differently.

Giving each other space to deal and allowing each other to work as much as possible in our different areas of strength has worked for me and Shawn. It’s allowed us, in the words of my favorite poet, Rainer Maria Rilke, to see the immense sky before and above us.

“Once the realization is accepted that even between the closest people infinite distances exist, a marvelous living side by side can grow up for them…which gives them the possibility of always seeing each other as a whole and before an immense sky.”

–Rainer Maria Rilke

 

Margaret King is the mom to the almost-9 year old mighty K-man, a spirited boy with half a heart who is determined to live fully, and is married to the awesome heart dad, Shawn. A content marketer and writer in Wisconsin, her other interests include hiking and being outdoors, reading, and avoiding going down the thrill water slides her son is passionate about. She hopes to have a small goat farm someday.

Making the (Heart) World a Better Place

 

In honor of Father’s Day, for the month of June, PCHA is pleased to focus our latest blog series on Heart Dads.  What better way to start than revisiting a powerful message from Heart Dad and recurring guest writer, Chris Perez.

Let’s get one thing out of the way: the day you looked at the grainy ultrasound image as your wife’s doctor started his or her sentence with “unfortunately” or the moment you realized your newborn would be whisked away via ambulance or helicopter, fatherhood became way different. You realized that the formative years of your child’s life would possibly be spent in doctor’s offices vs. on a football field or an ICU floor vs. a basketball hardwood floor. You suddenly found yourself more tired than you’ve ever been, more broke than you’ve ever been, and more scared than you’ve ever been. Being a dad is hard work, and if you’re like me, some days you feel like maybe you’ve got a bit of a grip on this whole things, while other days you feel like the Washington Generals and life is just waiting to douse you with a bucket of water. So how do you know you’re doing things right? Last year I stumbled upon this fantastic quote by Ralph Waldo Emerson, who wrote the following about success:

To laugh often and much;

To win the respect of intelligent people and the affection of children;

To earn the appreciation of honest critics and endure the betrayal of false friends;

To appreciate beauty, to find the best in others;

To leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition;

To know even one life has breathed easier because you have lived;

This is to have succeeded.

I actually have this quote cut out and taped on my bathroom mirror, and I feel like it’s super powerful, especially for a Heart Dad. You see, for us this quote seems a little weird. Laugh? You gotta be kidding me, right? I promise you guys, there are moments of laughter in there … it might take awhile, but it will come.

Maybe you’re not the smartest, but I guarantee you that Heart Dads work the hardest. And it doesn’t take a wall full of degrees to accomplish that. And sure, our kids may not be considered physically healthy, but we can make sure we raise heart warriors who are kind, empathetic, and want to make the world a better place. I think that is what Emerson was talking about there.

To know even one life has breathed easier because I have lived. That’s a big responsibility, but that’s why you share your story, that’s why you advocate for CHD research. That’s why I write my blog. Listen, there are days I don’t feel like doing it. I’d rather sit on the couch and eat a whole carrot cake, but people continue to contact me letting me know how much I’ve helped. And that is what keeps me from quitting. Dads, there are people out there waiting to hear your story … they need to hear your story.  Share it!

The journey of a heart family is full of ups and downs, cheers and tears, joys and sorrows. It would be so unfair to use traditional measures of “success” for a Heart Dad. For me, Emerson’s words are what I hope to achieve. I hope that it works for you too. Because when it’s all said and done, if I never get another raise, if I never make more money, if I never have the nicest car, it will all be OK as long as I’m a great dad who did all he could for his family and others. That’s how I want to be remembered.

So Heart Dads, when you’re giving yet another late night tube feed, or you’re trying to get comfy on that wonky recliner in your child’s ICU room, or you’re flexing off work to go to yet another doctor’s appointment, I want you to do a few things. First, take a few deep breaths. Next, think about the smiles and laughs, think about the awesome kid you’re raising, and think about what you’re doing (or can do) to make the world a better place for Heart Kids and Heart Dads. And my hope for you is that – in that moment – you’re reminded of your impact and your strength. Keep it up, Dads! And have a Happy Father’s Day this month!

HeartWalk2015


Blogger_Perez_ChrisChris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.

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

 

 

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.


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.

 

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.

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

Together, we will CONQUER CHD!

 

American Stroke Awareness Month – Terese’s Story

For the month of May, PCHA has been focusing on American Stroke Awareness Month. In the 4th week of our series, Terese Quarino shares her experience with stroke.

 

I remember the day, like it was yesterday…. The Wednesday before Labor day weekend, I called my cardiologist to say I felt some funny beats in my heart, but no other symptoms.  He said he would send me a holtor monitor overnight to wear for 24 hours. I did exactly what he told me to do, and when I received a call from him late on a Saturday night, a holiday weekend, I knew something was up!  He told me to pick up two medications at the pharmacy that night, start taking it, and that if I have any fast heart rates, go straight to the ER.  I agreed.  If I didn’t see him in the ER, I would see him first thing Tuesday morning in his office.  He explained everything  to me on the phone, but it came out of the phone like Charlie Brown talking  (Mwa-Mwa-Mwa sound).  I hung up the phone and didn’t tell my parents anything, except that I needed to pick up the medications and be at my doctors office Tuesday morning.The rest of the weekend went fine and we went to my cardiologist office Tuesday morning.

As soon as I arrived, I had an EKG, an echo, and blood work done.  It was determined that I was in heart failure. My heart rate was at about 300 beats per minute.  I met with an electrophysiologist and my cardiologist to determine what would be the best course of treatment.  We decide cardiversion would be the best route. Since I had already eaten breakfast that morning, we would have to wait until the next day.

Wednesday morning, my doctors started with a TEE (Trans-Esophageal Echocardiogram) to see if there are any blood clots that they could see before they performed the cardioversion.  When they didn’t find anything, they moved forward with the cardioversion. After the procedure I was feeling great.  The doctors decided to keep me overnight, until my Coumadin was at a therapeutic level. One of my parents always stays with me after any procedure or surgery.  I told my parents I was fine, and they could go home. Twelve hours after my procedure I had  stroke.

My nurse was in the room, checking on me, and I could not speak. Then my arm started to bend, and it went behind and arched my back. Next, I could not feel anything in my hands or feet.  The nurse left the room, and I remember thinking to myself, “why is she leaving me?” But looking back, I realized she pushed a button before she left. Seconds later, a rush of doctors and nurses came to my rescue.   If it was not for their quick response, the lingering symptoms from my stroke may have been worse.

After my stroke, I had cognitive, physical,and speech therapy, which I’m truly thankful for. I will be honest, I struggled with it! But, step by step, I got through it! I still struggle with how my stroke impacted my everyday life. My handwriting is horrible, it’s significantly worse than before my stroke.  I also have a hard time with recall. At work, when I need to speak at a meeting, I would jot down notes to prepare. Now, if I just write it down, I may not remember what I need to say, so instead I type ord for word in the note section of my phone, so I can read it.  All these issues add up to big issues.

Having a stroke has changed my outlook on life. It has taught me to live everyday to the fullest! My experience with stroke was quite a scary time for me, and I will never forget  how it felt!

 

 

 

Terese was born with Tetralogy of Fallot in 1973, which was repaired in 1974 at Children’s Memorial Hospital in Chicago, IL. In 1992, she had her second open heart surgery, and mitral valve replacement. Terese’s other medical conditions include a lumpectomy in 1990, and multiple treated aneurysms. She also started dealing with rhythm issues, and still is to this day, which required a cardioversion in 2007. Twelve hours after her cardioversion, Terese suffered a stroke. She has also had two ablations, and had a pacemaker implanted in September 2014.  Since then, Terese’s medical history has been further complicated, in recent years, by being diagnosed with Lupus (SLE) in 2013 and Shrinking Lung Syndrome in 2015. In her free time, Terese loves spending time with her family, friends, and her puppy, Payton. She also enjoys swimming and listening to great music.  She lives each day to the fullest!

 

 

 

American Stroke Awareness Month – Molly’s Story

 For the month of May, PCHA will be focusing on American Stroke Awareness Month. In the 3rd week of our series, Alison Ogden shares the story of her daughter Molly’s stroke at age sixteen.

 

Molly awoke for school on November 5, 2012 as if it were any other Monday in her Sophomore year of High School.  But life suddenly changed that morning, as her mother, Ailson, found her collapsed and unable to speak.  Even though Alison knew the signs of stroke, she didn’t recognize them in her physically fit, distance running 16 year old. Fortunately, the first responders did. The local hospital determined Molly had suffered a massive stroke following a dissection of her carotid artery.  After a scan was performed it was confirmed that Molly had a clot in the brain.  She was transported to a larger hospital where she would spend the next month and undergo a series of procedures designed to save her life. 

She was then transferred to an inpatient rehabilitation hospital in a neighboring state where she would spend the next 2 1/2 months.  She returned home on February 12, confined to a wheelchair and still unable to say more than a few words.  She started out-patient therapy right away.  Her determination and drive, along with her positive attitude and faith, kept her focused on recovery.  She returned to school on a part-time basis in April while still spending many hours in therapy each week. 

By taking a full load of classes, working closely with the help of a para-educator and devoted school staff, she graduated with honors, on time, with her class in May of 2015!

Molly has attempted college classes, but, because of her aphasia, she found them to be extremely difficult.  She still struggles to regain communication, her right hand and foot don’t work the way she would like, but she is determined to continue therapy and still sees improvement.  Molly brings joy to every situation she is in, including the volunteer work that she loves.  She is open to talking about her situation and feels that spreading awareness of the signs and symptoms of stroke is important. While caring for Molly, Alison has been inspired by her attitude. She has learned from her daughter to look for the best in all people and to live life to the fullest each and every day.

 

 

Alison grew up in Kansas City. She and her family, which includes her husband, Brad, daughter, Molly and son, Graham, has recently moved to central Oklahoma, where they live on a cattle ranch. Alison is a recruiter for Jos A Bank and feels lucky to work from home! Her husband owns a home restore/remodel business, with which Alison also assists.

Action Alert – Remind your Senators to fund CDC Efforts

DEADLINE: Friday May 12

Act Today!

Ask your member of Congress to Sign the Durbin-Grassley FY2018 Congenital Heart Disease Appropriations Letter.

It might be hard to look beyond the health care issues at hand, but there are other important Congenital Heart Disease issues that need our attention in Washington D.C., as well!

Each year, we need to make sure that Congress continues to fund the congenital heart disease public health research and data collection at the National Center for Birth Defect and Developmental Disabilities (NCBDDD), with-in the Centers for Disease Control and Prevention (CDC). This budget process is called Appropriations.  Senators Durbin and Grassley have drafted a letter to the Appropriations Committee asking them to support funding for the CDC program to better understand and treat the lifelong needs of those living with congenital heart disease.  They are seeking as many Senator’s signatures as possible.

Email, call, or tweet your Senator or their health staff and ask them to reach out to Max Kanner (Max_Kanner@durbin.senate.gov), today!

 

Luke Toth

In October of 2008, our heart hero, Luke, was born. We were fortunate to know about Luke’s congenital heart defect (CHD)tetralogy of Fallot—at our 20 week ultrasound. At one week old, Luke had a heart procedure (BT Shunt) and spent his first 23 days of life in the hospital. This was a temporary fix until he could have a full repair. At 9 months old, Luke had his first open heart surgery to correct his heart defect. His surgery was on Wednesday and by Saturday afternoon, we were home. We could not believe how amazingly well Luke did.

For nearly 4½ years Luke strived as a “normal” child with regular visits to the cardiologist every 6-12 months. Suddenly, he was admitted to the hospital with stomach flu. Doctors determined that many of his organs had completely shut down due to severe dehydration. The medical staff immediately started re-hydrating him. Luke showed signs of improvement the next day and looked like he was on the road to recovery. The staff monitored him regularly over the next couple of days to check how well his heart was working, but they didn’t find any problems.

Then, on the third day, Luke’s good health took a turn for the worse. Just as they had done the day before, the medical staff performed some tests, but this time, his chest x-ray showed his lungs filled with fluid. When they did a special test called an echocardiogram (echo), which is an ultrasound picture of the heart, the technician, by chance, started looking at the outside of Luke’s heart first.  Usually, an echo is performed by focusing on the inner workings of the heart. But, on this particular day, when the tech happened to check the outside of Luke’s heart, the doctor saw a spot that had never been seen on any of the previous tests, including Luke’s earlier echoes after his heart repair.

This chance finding led to more tests that showed his left pulmonary artery, the blood vessel that takes blood away from the heart to the left lung, had completely closed and was not supplying his left lung with blood. The doctors were astonished, especially considering all of Luke’s heart repairs took place on his right side!

This chance finding was the missing piece to the puzzle. Suddenly, everything made sense. When the team was hydrating Luke, they were giving him enough fluid thinking that both pulmonary arteries were working and sending fluid to both lungs. In actuality, all the fluid was going to one lung instead of two.  Because the fluid in his body had nowhere to go, Luke almost lost his life.  This chance finding saved his life.

Since then, Luke’s body has been running on one lung and will continue to do so. His heart doctor says that is 100% okay.  The part that gives us the most chills was when his cardiologist told us, “I always knew Luke was a special boy, but this diagnosis happened on accident. He showed us something that we have never seen before with the heart. We didn’t know a working artery would close itself off to protect the body. Now that we know this we can look for it, and your son, without a doubt, will save many lives. ”

Since this day, Luke’s case has been in many research studies to help other heart patients. We share Luke’s journey in hopes of helping other CHD families and spreading much needed CHD awareness to help in Conquering CHD!

 

American Stroke Awareness Month – The Asher James Foundation

For the month of May, PCHA will be focusing on American Stroke Awareness Month. In the 2nd post of our series, learn about the Asher James Foundation, founded by Jen DeBouver after the loss of her son Asher.

 

In October 2012 our whole World changed. The outcome of our son’s life was about to change. On October 5th our son Asher looked like a beautiful, somewhat healthy baby boy who was recovering from his heart surgery. He had been doing well when it came to his heart related procedures. He had gone through a fetal intervention, months before being born, a cath procedure at hours old, and then his heart surgery. He had a few minor hiccups along the way, but for the most part was doing well with recovery, so we thought.

On October 6th, Asher was red and puffy. My husband questioned the doctors as to why he was so red and puffy, but they didn’t really have an answer. It was the weekend, not much was really done to get one. By Monday, we really had no answers until finally they told us he had blood clots. The clots were in both jugular veins, and both arms.

It’s funny how dates stick with you. October 8, 2012. The day my son got his death sentence. When they told me he had blood clots, that is exactly what I thought because I didn’t really know much about them. What I thought I had heard was that they were deadly. And. They. Are.  I had no idea babies could get blood clots.

We met with the Hemotologist and she started him on different blood thinners, but she explained to us that there were no medications for children, especially infants when it came to blood clots. She reached out to colleagues across the country to find a treatment plan for Asher. Adult medications was the only option. We began treatment and it seemed to be working.

And then it wasn’t. The clots would redevelop.

Sadly, on October 23rd, Asher would lose his battle with these blood clots. Asher was a fighter and SO strong. He battled these clots for over 2 weeks. He inspired me with how much he fought, so before we even left the hospital, I had decided, in my shocked, grief filled state that I wanted to start a foundation in his memory. I wanted his fight against blood clots to continue.

So a few months later, Asher James Congenital Heart Disease & Thrombosis Foundation was created. I knew I didn’t want another parent to be shocked that their child could get blood clots. I wanted them to receive information while they were in the hospital of signs and symptoms of a blood clot. We started working with groups that deliver care bags to CHD patients and supplying them with our signs and symptoms cards.

Asher James Foundation has worked with Ann and Robert H. Lurie Children’s Hospital on spreading awareness in children’s blood clots by sponsoring Children’s Blood Clot Awareness Day. We have also been to Washington D.C. to advocate on children’s blood clots.

 

Each year for Asher’s birthday we hold a softball event where we play Chicago style softball against our local PCHA IL group. It’s a fun day remembering Asher, spreading awareness, and collecting things to donate to the CHD and blood clot patients in the hospital. We usually sell stuffed giraffes and donate one with each purchase. This year we are doing a book drive to collect giraffe themed books to donate to the patients. Asher would have been going to Kindergarten this year, and I’m sure he would have loved reading books.

 

A lot of research has been done in the past 5 years and treatment in children’s blood clots has come a long way. There are better treatments and survival ratings than when Asher was in the hospital. We had the privilege to meet with researchers at the University of Iowa to learn about some of the advancements.

If you provide care bags to hospitals where children could be at risks for blood clots and would like to add our signs and symptoms cards, please reach out to us and we would love to send you some. www.asherjamesfoundation.org.

 

 

Jen is a bereaved mom of 2, Olivia and Asher and a rainbow mom to Nina. Jen and her husband JD started Asher James Congenital Heart Disease & Thrombosis Foundation after losing Asher to provide support and awareness in children’s blood clots. In the past, Jen was the bereavement coordinator for Mended Little Hearts National and Mended Little Hearts of Chicago She decided to take a break to focus on her rainbow after all. She continues to do projects such as Grief: A Mother’s Project and currently the Rainbow of Hope Project. Each year she and her husband hold a softball event for Asher’s birthday, which includes collecting something (stuffed puppy or dog or books) to donate to CHD patients at Lurie Children’s Hospital. She also works with her sister-in-law to collect blankets for Olivia’s Blankets in memory of Olivia.

Jen is very open about her losses, and feels that by being open she can help others through speaking about their own loss or help others to learn how to be sensitive to those that have gone through a loss.

An Open Letter to Jimmy Kimmel

As many of you have seen, Jimmy Kimmel made headlines this morning, after his heartfelt monologue last night on Jimmy Kimmel Live. Jimmy shared the story of how his son Billy was recently diagnosed with Tetralogy of Fallot and Pulmonary Atresia and underwent open heart surgery, shortly after birth. The Pediatric Congenital Heart Association would like to take a moment to extend a kind hand of support  and compassion to the Kimmel Family, in an open letter by Amy Basken. 


 

Dear Jimmy,

As a card carrying member for more than 12 years, I’d like to welcome you to the club that no one wants to be a part of. Congenital heart disease (CHD) is a lifelong condition, and the journey is filled with storms and rainbows. But, let me reassure you, membership includes a fierce family of people who are at all stages on this journey and are ready to walk arm and arm with you.

Like you, I channeled all of my emotions into action. And let me tell you, it has made a difference. But you – in 12 minutes, you captured my 12 years of work! More about this later.

You are still at the beginning of your journey. Take care of yourself, take care of your family. Hug, heal and connect. There is healing power in talking with someone who has walked this path before.

Learn. Membership in this club requires learning a new language. As a parent, those first few hours were like drinking through a fire hose. For weeks I would recall a new bit or piece of information, or argue that I was never told something when, indeed, I had. Finding good quality resources can be reassuring and eye opening. There are the simple things to learn – CHD is a structural defect of the heart, present at birth or 1in100 babies are born with CHD. There are the more complex things – how to spell Tetralogy of Fallot with Pulmonary Atresia, how to say it ten times fast, or even how to explain it to someone else. Or that there is no cure, it requires a lifetime of specialized care, and what exactly that means for your child. Learn as much as possible but most importantly, advocate for your son’s care.

Ask Questions. Lots and lots of questions. I found that having several trusted experts including parents and other providers helped me to bounce around thoughts, ideas, concerns and dreams in a safe space. 12 years later, I still ask questions. Lots and lots of questions.

Once you’ve gotten to a place where you can breathe, really breathe, then you can channel your energy and passion to giving back. And boy do we need you. We need you to be relentless in your pursuit of the needs you identified in your 12 minutes:

  1. Awareness – Despite being the most common birth defect, it is still relatively hidden. And as a result seriously underfunded.
  2. Research – Federal funding for research dollars is essential. At the Pediatric Congenital Heart Association we helped draft and are now working to pass legislation specifically aimed at improving federal CHD research funding at the NIH as well as public health research at the CDC.
  3. Access to Health Care – on behalf of PCHA, my son spoke at a briefing at the U.S. Capitol about his CHD and the need for coverage of his pre-existing condition.
  4. Hospital Outcomes Transparency – you wanted the best care possible for your son, and certainly received that at Children’s Hospital of Los Angeles. Fortunately, you had access to resources who could understand the data and help guide you. Most families do not. At PCHA we have been working since 2013 to help promote public reporting of congenital heart center outcomes.

Learning your child has congenital heart disease is devastating. But there is hope. And we are here to help.

I’d like to introduce you to the Pediatric Congenital Heart Association. A “one stop shop” for education, support, and advocacy, everything I’ve been talking about. They are there through all the stages, from learning to doing. I urge you to get, and more importantly, stay engaged. Join the thousands of other patients, families, care providers, doctors and surgeons who recognize the need for learning, sharing and support.

Welcome to the club. Although we are worlds apart, united in the most undesirable way, together We Are Conquering CHD.

Amy Basken,

Heart Mom
Co-Founder and Director of Programs – Pediatric Congenital Heart Association
On behalf of our national volunteers and the 2.4 million people living with CHD and their families that we represent.

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