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 Conquering CHD 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.
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:
- Awareness – Despite being the most common birth defect, it is still relatively hidden. And as a result seriously underfunded.
- Research – Federal funding for research dollars is essential. At the Conquering CHD 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.
- Access to Health Care – on behalf of CCHD, my son spoke at a briefing at the U.S. Capitol about his CHD and the need for coverage of his pre-existing condition.
- 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 CCHD 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 Conquering CHD. 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.
Co-Founder and Director of Programs – Conquering CHD
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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