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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10 thoughts on “An Open Letter to Jimmy Kimmel

  1. Well said, I’ve spent 17 years shouting from mountain tops to raise awareness.. Jimmy Kimmel has a huge platform now to help with our children’s long journey

  2. Lynn Pearson on said:

    Perfectly written. I too welcome you to this roller coaster of emotions.

  3. Tammy Wilhelm on said:

    Thanks for writing this letter. Perfect from parent to parent. I am a pediatric nurse with an adult child who was thought to have Hypoplastic Left Heart Syndrome, but after Norwood Procedure had the unthinkable happen. The left side of her heart grew. It is now full functioning and her diagnosis has changed to primarily, Aortic Atresia. She had several other defects leaving baffles in her atrium and prolonged surgery that caused her to develop Sick Sinus Syndrome with a pacemaker before the age of 3. She is a fine young woman, now 22 and just finished her BA in Psychology and has her 1st job in the field. She is one of the lucky ones! Yes, research, much more research and awareness is needed.

  4. Kimberly Starkey on said:

    I was born in 1978 with multiple CHDs and one of them is TOF. I hav had 3 surgeries and numerous procedures and also have a pacemaker. Don’t let fear override the hope of survival. There are many survivors who wasn’t suppose to make it past a certain age. I am one of them. Keep fighting the fight for your son and family. My prayers are with you all.

  5. My daughter is 18 and her name is Cassidy. She has cardiomyopathy, the grim reaper of heart defects. By age 3 she already had open heart surgery, a pacemaker and a defibrillator. She has CHD/CHF and is a miracle to say the least. She has spent half her life in the hospital, we have had to hand her over to the OR more times than I care to remember. Praying to the God’s when the men approaching you in scrubs are coming back with all you want to hear as you wait on baited breath. Cassidy is a warrior. She has had 9 major operations total. We live on Long Island and are fortunate to be treated by some of the best doctors in NYC. Here’s my question to you Mr. Kimmel, why would a person of your celebrity status with a platform that could be heard world wide, choose to localize a CHD foundation to just LA? Are there other chapters you are reaching out to, b/c we could all use your voice.
    Best wishes with your son. He sounds strong. You may be raising your own little own. God Bless.

  6. Shari on said:

    I too have a grandson who has CHD — right side of his heart never developed during Gestation time. He had his first open heart surgery when he was three days old and his second, a hemi fon tan, when he was six months old. Depending upon his growth these next few months, we are looking for his second hemi fon tan to be done towards the end of 2017. He is such a warrior and brings so much joy to our lives. He is currently going to physical and occupational therapy three times a week where they are working at getting him to be able to crawl, reach for objects, and hopefully walk. It has been a slow process, but with every little step he takes, it seems to us like a giant leap. Next week he is having a swallow test done because he has been experiencing not being able to keep his food down all the time. He is still eating just pureed food and is on Pediasure. He is two years old and weighs roughly 23 pounds now . Isaac has glasses as well. It amazes me when I hear other peoples stories. You look at your child and think your issues are the absolute worse, but then you hear,/read someone else’s stories and it puts everything back into perspective. We have learned that everything happens in God’s time and without our faith I don’t know where we would be. I am not Jimmy Kimmel so I don’t have a large platform to spread the word, but I do understand the ups and downs of having a child with CHD. I wish we had one of your organizations in the state of Iowa. We have a terrific heart clinic in Des Moines that I wouldn’t trade for anything. Best wishes to all parents who have children with CHD. God Bless.

    • Adriana on said:

      My son has TOF, he is now 3 Years old and had his repair surgery at 9 months of age.
      He also has a hard time eating and doesnt keep anything down either. I also still pure all his food at age 3. He weights 23 pounds like your grandson. Please let me know how the study goes because i dont have a diagnose still we have visited many doctors even paycologist thinking about an eating disorder.
      My email is adyvillarreal@hotmail.com

  7. Rick Westfall on said:

    My son is 22 years old and has HLHS and PLE. He told me last night that because you are famous that your road will be easier than ours has been. I told him because you are famous that other people’s road will become easier too. He is happy knowing that your special child could also help save so many babies lives, like he has in 22 years through awareness. It is a long bumpy road that only some can travel and be strong enough to handle the potholes on every turn. Thank you Jimmy for sharing with others the things most people thankfully will never have to deal with.

  8. Mike Fiore on said:

    My daughter Catherine just turned 12 on May 3. She is a happy, funny caring child and there is no other person I would rather spend time with. Thanks to Dr Rychik and Dr Spray and Dr Gil was also able to meet Catherine. And of course all of the wonderful Cicu NURSES! If I could give Jimmy two pieces of advice they would be to call Chla anytime day or night and ask for the cardiologist on call if he is scared or nervous. I always was able to speak directly to a Cardiologist and I always felt better. Luckily, I haven’t had to call in years, but I bet I could. The other is to watch Billy’s developmental milestones and if he is delayed at all to seek support immediately. I’m sure Chla can help. Thanks Chop.