Noah’s Journey with HLHS

As many know, Noah and his twin brother Aiden were born via c section at Brigham and Women’s Hospital in Boston on February 13, 2020 weighing 6lb 5oz & 6lb 4oz. After delivery Noah was transferred to Boston Children’s Hospital where he will stay for an undetermined amount of time, but estimated anywhere to 2-4 months depending on how he is doing. Noah was born with a rare congenital heart defect (CHD) known as Hypoplastic Left Heart Syndrome (HLHS).

To put it in the most basic terms, the left ventricle of the heart is severely underdeveloped and cannot pump the blood to the rest of the body as it should, it’s useless. The cause of this defect is unknown, but we do know a baby cannot survive with this heart condition if surgery is not completed. In Noah’s case, he also has mitral stenosis- which means the mitral valve is leaking blood back into the left ventricle and he also has aorta atresia- which means no blood is able to pump out of the left ventricle, through the aorta to the rest of the body since it is so narrow. There are three surgeries completed to reroute the blood flow to use the right side of his heart to function as his whole heart. These surgeries are fairly new to the medical field, if born 30 years ago, Noah’s condition would’ve been fatal.

He underwent his first of the three major heart surgeries the day after he was born on Valentines Day 2/14. The first surgery is known as the “Norwood” procedure. The surgery took all day to complete and it was a success. Noah is now being sedated and paralyzed under medication for several days because his chest is still open from the surgery and they don’t want him moving as his body recovers and he starts to heal. Noah is hooked up to tons and tons of machines and wires to monitor everything possible. The surgeon is hoping to close his chest on Monday or Tuesday.

Noah’s twin brother is in the original hospital I delivered at Boston’s Women’s and Brigham’s NICU. He had fluid in his lungs and needed c-pap for a few hours but the c-pap caused an air pocket in his lung which has set him back. He now needs that to be resolved, along with learning  to eat, swallow and breathe at the same time. Until his lung issue is resolved he is being fed through an NG tube. At this point the NICU can’t give us an estimated time for when he will be discharged.

Since both Aiden and Noah are in Boston and we currently live 2 hours away from the hospital, we have lots of new expenses on top of our current everyday home expenses that we must maintain. Some new expenses include: parking in boston, lodging, gas back and forth to Boston, food, medical expenses, and other things that pop up along the way.

It is hard for Josh and I to swallow our pride and ask for assistance, especially considering how much we value earning things on our own. However, this situation is out of our control and I have no choice but to do everything in our power to be there with Noah as much as can during this critical time in his life, in addition to caring for Aiden and our 1 year old son Daniel.

We would be eternally grateful of any donation or even just sharing this fundraiser. Thank you all so much, from the bottom of my heart. I will continue to post updates of Noah’s progress as we learn more.

With Love,

Shannon, Josh, Daniel, Aiden & Noah ♥️

Noah’s Facebook Page:
https://m.facebook.com/NoahsJourneyHLHS/

Instagram: @noahsjourneyHLHS