A Hero in A Small Package

The ending of June brings one more Heart Dad story. Jason Ruud shares his story as dad to heart kiddo Breanna
 

Faith and Miracles:

When I was growing up, I always considered my heroes to be professional athletes who made incredible moves on the field or court and made the impossible look easy. Little did I know, that in 2010 the word “hero” would take on a whole new meaning for our family. That word became synonomous with courage, strength, and perseverance against insurmountable odds and delivered in our baby daughter, Breanna.

 

 Learning that your child is going to be born sick….really sick

Like many heart families, our world came crashing down as we prepared for the arrival of our baby. After our first child, we were excited to go to our 20 week ultrasound to learn the sex of our second. We watched as the sonographer did there typical measurements and let us know we were having a girl! But, this time was different than with our first. She kept coming back to the heart. We knew by the look on her face something was wrong. Each time she scanned the heart, it started to become obvious to us as well. She left the room and our hearts sank. There was something wrong with our baby’s heart. The OB quickly diagnosed our daughter with single ventricle heart disease. I remember walking into our home after that visit and collapsing to the floor in tears and disbelief. We quickly learned from our new cardiologist that our baby had Tricuspid Artresia. More weeks passed and more ultrasounds. Each gut wrenching scan brought new complications. Eventually, we learned that our daughter would be born with tricuspid atresia, transposition of the great arteries, bi-lateral SVC, and pulmonary stenosis. We officially entered the world of congenital heart disease, and I became a heart Dad.

 

 

 

Breanna’s story

Thanks to the incredible team at Children’s Memorial Hospital in Chicago(now Ann and Robert H. Lurie’s) our daughter was born on June 6, 2010 and transported from our local hospital down to the NICU at CMH to prepare for surgery. I sat there in the NICU alone, my wife still an inpatient 50 miles away, watching cardiologists and surgeons pour over CT scans of our baby daughter. Three days later she received her first procedure, the Norwood and BT Shunt. As I look back on that day, my wife and I were so unaware to the incredibly risky surgery my daughter was undergoing. That changed quickly, when four days after her procedure, the doctor’s removed her intubation tube. What was meant to be a joyous moment, became our worst nightmare. Breanna immediately began to struggle, gasping for air, she quickly turned blue, her heart began to slow…then stop. Our baby daughter had gone into cardiac arrest. She was rushed back into surgery and 10 hours later, an attending doctor came to speak with us. They were not sure why this happened. Fortunately, they were able to restart Breanna’s heart after 8 minutes of “down time” and revise her shunt as a precaution. Her second surgery was much harder than the first. Breanna fought for her life for the next 72 hours. So many moments during those days that we thought we would have to say goodbye. Shortly thereafter, Breanna went into septic shock due to a blood infection. But, Breanna kept fighting. Days turned into weeks, then weeks into months. Each attempt to exhubate the breathing tube was failing, causing additional set backs. After 4 exhubation attempts we decided to trach our baby daughter. 6 months after arriving at Children’s Memorial hospital, Breanna came home. Now tethered to a portable ventilator with around the clock nursing care, our home became her new hospital room. Breanna surprised the doctors by thriving on her trach and ventilator! She received her second of 3 surgeries, the Glenn procedure at 2 years old. Again, she defied the odds receiving the Glenn procedure while still on a ventilator. Between her second and third procedures, Breanna was finally able to be taken off the ventilator. At 4 1/2 years old, Breanna received her 4th open heart surgery, the Fontan procedure.

 

Living in constant chaos

Those initial 6 months were the hardest. I began deflecting my emotions and my inability to protect my daughter into learning everything there was about her heart disease. After leaving the Ronald McDonald House, my wife and I began a grueling schedule that ensured my daughter would always have a parent by her side. For the next 4 months, I traveled an hour and a half from our home in the western suburbs downtown to CMH. I would arrive in time for morning rounds at 7:30am and never missed a single one. To me, my new job was to listen to the doctors, ask questions, and be her fiercest advocate. Her medications, vitals, daily tests, physiology, everything, I knew them all like the back of my hand. I memorized every variable and range in every test and when things were off, I prepared myself and my wife for the “ride.” This was my way of “normalizing” and coping with the intensity of the situation. I’m sure it drove the doctors and nurses a bit nuts. But, I was grasping at anything to control. After rounds, I would hop on the “EL” train and head south to my job, work there till noon, then work from Breanna’s ICU room till my wife arrived and stayed through the night. My wife and I recently reflected on how incredibly flexible my manager was during this time. I know fathers that had to leave their job, just to spend time with their sick children. I was blessed. One less stressor in a volatile situation. The biggest casualty during this time was my 3 year old son. I regret losing 6 months as his father. The chaotic events of those 6 months effect him to this day.

 

The aftermath

Those 6 months are seared into my mind. There’s not a day that goes by that I don’t think about them. There are so many memories that I often reflect upon. The initial 9 weeks at the Ronald McDonald House. The “bad” days sleeping in the chair next to my daughter praying that she will survive the night. Watching the doctors and nurses tirelessly work throughout the night like machines. And worst, the late night ring of the phone that makes you want to vomit. I felt a complete loss of control with no ability to protect my newborn daughter. Fortunately, my faith was my foundation and the only thing that got me through. I now suffer from PTSD in the form of germophobia. I wash myself and my children’s hands incessantly. I will do anything to avoid those CICU rooms. And when we do have to return for sickness or surgery, those emotions and memories come flooding back.

 

I have learned so many things as a heart father. One of the biggest lessons I have learned along the way is hope and humility. As a Father, my job is to protect my family, to keep them safe from harm. A task we fail at miserably when dealing with the complexities of congenital heart disease. There were so many days that I held my baby daughter’s hand in those hospital rooms and prayed to switch places with her, willing to take her pain away and end her suffering. Unfortunately, as a heart Dad, we must rely on other’s to heal our children. Thank goodness my family was blessed with the amazing CICU nurses and staff at Lurie Children’s Hospital and the incredible surgeons: Dr. Carl Backer, Dr. Sunjay Kaushal, Dr. Hyde Russell, Dr. Michael Monge, and Dr. Osama Eltayeb. Without these incredible people, my daughter wouldn’t have defied insurmountable odds and become a vibrant and beautiful 7 year old.

 

Today, I serve on the board of a non-profit. We focus on advocating for congenital heart disease and raising funds for an experimental technology that may someday improve and extend the life of children living with single ventricle heart disease.

 

 

Jason is a 41 year old resident of South Elgin, IL. A western suburb of Chicago. He works in technology as a creative lead, building interfaces for enterprise software. Jason is an avid outdoorsman who’s passionate about hunting and taking his kids fishing. He is also the head coach of his son’s youth football team. He’s been married for 11 years to his wife, Ashley, who cares full time for their 3 children: Caleb(10), Breanna(7), and Jillian(1). Ashley is also treasurer for PCHA – IL.

A Little Love Story

PCHA continues its Heart Dad Series with a piece by Ryan Freund. Here, Ryan shares with us how being a dad to the amazing Adair, as she battles a rare genetic disorder that includes CHD, hip dysplasia, digit issues, scoliosis, tethered cord, hypothyroidism, hypoglycemia, is both the greatest blessing and greatest burden of his life.

 

 

The burden: I was talking with some parents of special kiddos the other day, and we got on the topic of PTSD and began discussing the moment (or moments) that REALLY impacted us emotionally, physically, etc.  The event that really strained us was during our daughter’s last open heart surgery.  Adair required another arch reconstruction and the Ross-Konno procedure, which involves removing the aortic valve, harvesting the pulmonary valve and placing it in the spot of the aortic valve, and putting a conduit in the place of the pulmonary valve.  As this was Adair’s third OHS, we had developed an understanding of how long things ought to take during surgery.  That day, everything just seemed to take extra long…but after 13 hours, we got word that they were closing Adair’s chest and that we would see her in about 30-45 minutes.

 

When time started to drag on toward the 45 minute mark, we got the feeling that things just weren’t right.  That’s when the surgical nurse came out to give us the news that the closure had taken a very bad turn.  Coming off the operating table, Adair’s heart went into ventricular fibrillation, she received two minutes of chest compressions, and she had to be defibrillated.  Once they got her heart stabilized, they re-opened her chest, called in the on-call cath lab team, and needed to check her coronaries to ensure the heart itself was being fed.  After seeing our little girl off to surgery at 7am, we finally got to see her in the hallway at 10pm as she was being wheeled back to the Cardiac ICU.  There were some additional complications during our stay which further intensified our experiences – Adair had an adverse reaction to a medication that made it look like she had brain damage.

 

All told, riding the emotional rollercoaster of being very close to losing our daughter, coupled with the prospect of her potentially having brain damage, we couldn’t talk about the whole experience for about 3 months without being overcome with tears…tears that couldn’t be controlled.

 

The blessing: I hear people say all the time that they “wouldn’t change a thing about their lives, because otherwise they wouldn’t be the people they are today.”  I am here to tell you that I would absolutely take away my daughter’s genetic disorder!

 

But since that isn’t possible, I must say that the past 2 and a half years have been life-changing in so many positive ways.  First and foremost, we have the most precious little child you could ever imagine.  She is tough beyond words, she is sweet, she is funny, and she has this way of drawing you in when you meet her that really grabs at your heart.  I think many others would confirm this, but when people meet Adair, they really seem to love her – truly love her.  She has a way about her that is captivating.

 

She has taught her mother and I about the depths of faith, unconditional love, patience, and forgiveness.  She has given us a remarkable perspective on life that is a true blessing.

 

Speaking of perspective, I will share just a small glimpse into the perspective Adair has given us.  I think sometimes it’s easy for us as parents to check out every once in a while.  Being a parent is TOUGH whether your kiddo is medically complex or not, and the age in which we live offers a lot of distractions.  It’s very easy to flip on the television and hit up Facebook for long stretches.  It’s easy to lose your patience with a behavior.  It’s easy to lose focus.  Now don’t get me wrong, we all need a mental break sometimes!  I would be lying if I said that I’m 100% on all the time!  But what Adair’s life has done for us is bring into focus the preciousness and fragility of life.  We have no idea how much time we will get with Adair, but I can say with certainty that the perspective Adair has brought my wife and me causes us to remind each other that we need to cherish each day.  We need to be present each day.  We need to love fully each day.  How many people get the opportunity to understand the preciousness of life in this way?  It’s a remarkable blessing!

 

I’d like to send some additional thoughts out to the fellow heart dads out there.  For a lot of us, sharing our feelings, our emotions, our struggles, our insecurities is tough.  We’re men, and many of us want to be the strong shoulder to cry on as opposed to the sobbing mess in the corner.  Let me tell you, though, that it’s ok (and probably even necessary) that we talk about our struggles, that we share our concerns, and that we are ever-present for our kiddos.  Being a dad to a special child is a huge burden, there’s no question, but it can also be a huge blessing.

 

I pray that all of you fellow heart families find the daily blessings in your lives as you walk this very special path.  And I pray that if you are a family member or friend of a family with a special child that you love them unconditionally and are able to be a light in those burdensome times of darkness.

 

 

Ryan is a 34 year old resident of New Berlin, Wisconsin who grew up in northern Illinois.  He is in sales in the automation and power transmission industries and loves what he does for a living.  Ryan has been married for 9 years to his wife, Melissa,  who is a mechanical engineer. Melissa now stays home with their daughter Adair full-time.  Adair, is 2 and a half years old and has a newly discovered genetic disorder which explains her complex CHD (interrupted aortic arch, VSD, ASD, surgically repaired bicuspid aortic valve with sub-aortic stenosis through Ross-Konno procedure), hip dysplasia, scoliosis, tethered spinal cord, syndactyly, hypothyroidism, cognitive disability, and a few other things.

 

 

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!

 

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!

 

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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American Stroke Awareness Month – What is Stroke and Its Warning Signs

 For the month of May, PCHA will be focusing on American Stroke Awareness Month. In the 1st post of our series, Sydney Taylor, PCHA Virginia’s ACHD Board Director, shares life-saving information defining stroke and its warning signs.

 

May is American Stroke Month, and for a good reason. According to the National Stroke Association, a stroke occurs every 40 seconds and is the 5th leading cause of death in the United States. Strokes and heart attacks are often discussed together, but are actually very different. Commonly known as a “brain attack,” a stroke happens when blood flow is cut off to any area of the brain. This lack of oxygen results in death of brain cells, which can lead to all sorts of issues. The extent of the damage done largely depends on the size and type of stroke. People may experience only temporary weakness following a stroke, or they may be permanently disabled or pass away.

There are two categories of stroke, ischemic and hemorrhagic. Ischemic strokes are the most common type of stroke, accounting for approximately 87% of strokes. An ischemic stroke is caused by a blood clot cutting off blood flow to an area of the brain, and there are two subtypes of ischemic stroke – embolic and thrombotic stroke. An embolic stroke occurs if a plaque or clot travels to the brain from another part of the body and gets stuck in a blood vessel in the brain. During a thrombotic stroke, a blood clot forms in an artery in the brain. These types of stroke are most often caused by hypertension (high blood pressure) and/ or cardiac dysrhythmias, such as atrial fibrillation. A transient ischemic attack, or TIA, is a temporary loss of blood flow to a part of the brain. A narrowing in any artery that carries blood to the brain – whether it be due to a clot, plaque, or arterial defect – can cause a TIA. Forty percent of individuals who experience a TIA will have a stroke, and almost half of all strokes occur within just a few days of a TIA.

A hemorrhagic stroke occurs when a brain aneurysm or a weakened vessel in the brain leaks or bursts. Hypertension is a risk factor for an intracerebral hemorrhagic stroke, in which a vessel bursts and blood leaks into the brain tissue, causing cell death and malfunction of the affected area. Another type of hemorrhagic stroke is called a subarachnoid hemorrhagic stroke. This occurs when there is bleeding between the brain and the surrounding tissues. Taking blood thinners is a risk factor for this type of stroke, which may apply to individuals living with CHD.

Warning signs of a stroke can include any sudden numbness or weakness of the face, arms, or body (particularly on just one side of the body); dizziness; difficulty walking, seeing, speaking, or understanding; confusion; or headache with no obvious cause. If you or your child experience any of these symptoms, call 911 immediately! Here are a few good ways to assess symptoms:

  • Have the individual hold their arms out straight, palms up and eyes closed. If they are unable to keep        both arms at the same level, this may indicate a stroke.
  • If you are out ordering dinner and instead of a salad they request a shoe, this warrants immediate              intervention.
  • Ask the individual to smile. If one side of their face droops, they may be having a stroke.

Almost 2 million neurons are lost every minute that a stroke goes untreated, which contributes to the extent of damage sustained. From the onset of the stroke, providers only have three hours to administer thrombolytics (“clot-busting” medication) for successful treatment. Of course, any strange or unusual symptom should be reported immediately.

Some people with CHD may have many risk factors for stroke. It is important to speak with your healthcare provider about your risk, follow their recommendations, and continue to get appropriate care to keep your heart and brain healthy!

 

National Stroke Association. (2017). Signs and symptoms of stroke. Retrieved from http://www.stroke.org/understand-stroke/recognizing-stroke/signs-and-symptoms-stroke

 

 

Sydney Taylor is a Congenital Complete Heart Block survivor, and has received pacemaker therapy since she was 15 hours old. She is the Adult CHD Board Director for the Pediatric Congenital Heart Association of Virginia, and received her BSN from Shepherd University in May 2017. She enjoys coffee and a good book, hiking and kayaking around the beautiful Shenandoah Valley area, visiting national parks, and making friends with any and all dogs.