Join us in spreading CHD awareness by walking this year in person or from wherever you are. When you purchase your new Oli Strong T-shirt, all proceeds raised will be donated to various charities (see below).
When: May 18th 8a
When: Franklin Park Zoo (1 Franklin Park Rd, Boston, MA 02121)
T-shirt color: For the walk we will be rocking "Midnight Navy" but feel to snag any color that makes your day to day outfit pop. Bonfire link
Why: During our 8 week scan, we were excited first time parents furiously planning an our new baby's room and fearing not knowing how to properly burp him. During our 20 week scan, our world as we knew it was flipped upside down as we discovered we would also become heart parents. Oli was born with a rare heart condition called Hypoplastic Left Heart Syndrome (HLHS), essentially half of a functioning heart.
The typical path is a series of 3 staged open heart surgeries that essentially re-plumbs the heart to function with a single ventricle (instead of 2). The Norwood, at less than a week old. The Glenn around 3-6 months of age. And finally the Fontan between 2-4 years of age. Oliver's path was further complicated by having abnormal connections between his left and right ventricles and his coronary arteries. This required unique techniques during his Norwood which lead to a long, uncertain recovery. While it seemed this first surgery was a success in the end (after 57 days inpatient), it turned out the connections failed to recede enough in the end and his pre-Glenn cath raised concerns about moving forward with the single ventricle path.
On Dec 10th, 2021 Oliver was listed for a heart transplant due to his systolic dysfunction and the doubt raised about his current anatomy being able to handle the subsequent Glenn and Fontan procedures. Transplant was his best option to being able to grow, develop and live the fullest possible life. After a roller coster of an inpatient stay that included, VAD conversations (external heart pump), lower extremity paralysis, stroke event, multiple interventional caths, feeding pumps, 3 bouts of NEC, weeks & months of sedations weens (horrible), heartblock & covid...we finally got the call on June 6th.
After 210 days inpatient and officially 178 days listed, Oliver received his gift heart and has been thriving ever since. Every day he continues to amaze us and give us hope that he will be able to live a close to normal of a life as possible. He already has a love for food and exploring. While he's still behind in many areas of development he is closing gaps fast and we cannot wait for what the future holds for him.
By funding CHD research we can hope that one day we will live in a world where there is finally a cure for CHD. These Drs and nurses are truly amazing but if we can find a way to give them less work, that will make everyone's heart happy.
CHD Facts:
- 1:100 children are born with CHD
- 1:4000 children are born with HLHS
- More than 2.4M US kids and adults are living in with CHDs
- 3000 people in the US are current waiting for a heart
- CHD is the #1 worldwide birth defect
- There is no cure for CHD
Here is his Caringbridge link if you want to read more about Oli's 10 month journey from birth through transplant (in English y espanol) : https://www.caringbridge.org/visit/olishlhsjourney
