Remy was born early at 34 weeks on Christmas Day after 4 weeks with Mommy in the hospital on bed rest for early membrane rupture. At one month old he had to have surgery for a hole in his heart and a blood vessel that wrapped around his airway making it too narrow. As a complication of surgery he had to spend three weeks on cardiac bypass, a machine called ECMO (Extra Corporeal Membrane Oxygenation). It gave Remy the opportunity to let his body heal after surgery, without it he never would have made it. For 3 weeks he had a nurse and a technician at his bedside 24/7. Unfortunately ECMO has side effects as well as benefits. Although he was able to maintain blood flow to his organs, he permanently lost blood flow to his arms and legs and had an amputation above the right elbow.
He also underwent a tracheostomy connected to a ventilator. In order to support his growth after such protracted illness he had a G-tube to allow direct feeds through a feeding tube.
After over 200 days in the cardiac intensive care unit, while in preparation to finally come home, Remy suffered a cardiac arrest and while he was able to make a degree of recovery such that friends and family were able to say their goodbyes, he passed away on 8/15/17.
The care and attention provided by the physicians, nurses, technicians, assistants, custodial staff and everyone else has been incredible. Childrens National truly is an exceptional institution that can handle even the most complicated cases. We have been lucky that we live so close that we can drive to the hospital and visit Remy on a daily basis and continue to work. There are so many families who are not so fortunate. Some live several hours away, others have flown here from other countries in order to give their child the best possible chance for a good outcome.
Please consider supporting Race for Every Child and allow any sick child to have access to the care that Remy has received. Having a critically ill child is an awful experience, but it can be made even more terrible when having to decide if you can afford the necessary treatments to undergo surgery. You can sign up to run or walk with Team Remy, or provide a direct donation to a good cause. You can also share this message with your friends and family so that we might help even more patients at Children's National.