The week leading up to Valentine’s Day this year holds a different significance for our family. This is Congenital Heart Defect (CHD) Awareness week, and we are working to raise awareness of the prevalence and impact of CHDs, which affect 1 in 100 children. This is personal for me and John as our fourteen month old son Nathan was born with two Critical Congenital Heart Defects (CCHDs, affecting 1 in 10,000 babies).
In honor of Nathan, and all of New York's littlest heart warriors, we have organized a fundraiser to support the Babies Heart Fund of Columbia University Medical Center.
The Fund's mission is to:
- fund clinical research into CHDs
- attract and retain the world's leading pediatric cardiology practitioners, and
- support pediatric patients, particularly as they transition into adults living with heart defects.
For children like Nathan, it is critical that New York City offer the very best in pediatric cardiology care. We did not know whether Nathan would survive a 15 minute ambulance ride to Columbia; transferring him to another heart center was out of the question. Our hope is that we can support the Babies Heart Fund to ensure they have the resources necessary to keep the best pediatric cardiology faculty here in the best city in the world. This is a real concern as Nathan's own heart surgeon, the amazing Dr. Jonathan Chen, was recruited away last year to head the pediatric cardiothoracic surgery team at Seattle Children's Hospital. We need to ensure that Columbia has the resources to fill the gap left by Dr. Chen and to keep providing the level of care that Nathan received, and all children deserve.
To share more about our journey, and the impact that CHD has had on our family and on families everywhere, I made a video that tries to express in pictures and music what our first year as a CHD family has been like for us. Our journey with CHD is far from over as we still have nursing care for 20 hours/day, therapy sessions 8 times/week, and countless doctors visits and follow ups. Nathan will need at least one more heart surgery at some time in the future. But, it is amazing to see where we started the year, and where we ended it:
I hope you will watch and consider supporting Babies Heart Fund in honor of Nathan and all of the littlest mended hearts at Columbia University Medical Center/ Morgan Stanley Children’s Hospital.
All funds donated will go to the main charitable fund of Columbia University and be specifically earmarked for Babies Heart Fund.
With thanks from my heart (which will always be a bit broken for Nathan and all CHD kids),