Help Braven Heal: Congenital Heart Defect

UPDATE: 1/18/2025

We were lucky to take Braven home and got through the holidays feeling incredibly blessed to be parents. He has been monitored by his cardiologist and pediatrician and was put on a LASIX to help fluid retention in his lungs. We learned that if his heart is not repaired his lungs will suffer greatly and could have pulmonary hypertension. The goal was to get to 2 months old (most babies with TAPVR do not) and we are almost there surgery is in a few days. He had his pre-op appointment yesterday and they found out he has 2 extra veins (they thought only 1) that connect to the superiorvena cava that are low near his heart. Leaving this behind would lead to an “inefficient” system that would need to be repaired later in life. (Around 3 or 4) if they do the repair of the extra veins while they are repairing the hole in his atrium and reconnecting the pulmonary veins, it would be more extensive and higher risk. Also it could lead to narrowing over time which they would have to monitor closely and have another surgery to repair. It could also cause arrhythmias that lead to having a pacemaker (starts the heartbeat with electrical signal). We also learned that his connections to his heart (there are 3 subtypes of TAPVR) is rare as well and does not have an official name making it a bit more complex than originally thought. Either way, our baby boy will be monitored for the rest of his life. The day we brought him home, Dave received a call that 80% of his company was liquidated. He is a director of data analytics so they have kept him on until March. Given that stress and the anxiety of what Braven is going through and receiving just some of his medical bills, the goal has been changed. Dave has been actively applying for positions but things are still up in the air. The hardest part is yet to come and it just makes things more difficult that he is such a normal, happy baby otherwise. We will continue to keep this updated, please keep us in your prayers for this Wednesday 1/22. Your support does not go unnoticed.

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When we named him Braven, we didn’t know he would have to be brave within the first few days of his life. Or how brave we, as new parents would have to be. I had a beautiful birth at Emerson Hospital, the nurses took excellent care of me and I would not have changed a thing. He was born Wednesday 11/27/24 at 7:51 pm and around 1:30 am Friday morning he was taken out of our room due to his temperature being over a 100. Not knowing why or for how long we waited, confused from lack of sleep and new parent worries, he was then given tests in the special care unit. Not knowing what would be next, we were faced with so much fear and uncertainty. We watched as doctors and nurses brainstormed and then his concerning O2 and all the IVS. The sound of the machines will be embedded in my mind forever. Around noon Friday, they decided to transfer him to Mass general via medflight due to his O2 and a concern that it could be his lungs or heart. Still uncertain and sleep deprived, we drove to Boston to Mass General Brigham. Getting lost and going to 2 hospitals (corporate office for Mass general) and Brigham Women’s, no thanks to the GPS. We finally found Mass General and then they were able to conclude it is an issue with his heart.

Our beautiful baby boy has a congenital heart defect called Total Anomalous Pulmonary Venous Return. Meaning his pulmonary valve coming from his lungs is located in the wrong place and so his oxygenated blood is mixing with his deoxygenated. He also has a hole in his ventricle that allows the blood to mix. Doctors at Mass General do not do this kind of surgery to repair hearts so around 4pm Friday he was transferred to Boston Children’s Hospital. Through all this, our baby boy is currently stable and is so incredibly strong for what he went through after not even being 48 hours old. He is currently still at Boston Children’s and we are waiting to see his CT of his heart to confirm when the open heart surgery will be. Fingers crossed we will be able to take him home while we wait for the surgery.

I want to shout out my brother John and his wife, my soon to be mother in law and my parents & my bridesmaids for all the support to help us get through yesterday. It truly was the longest, hardest day of our entire lives. It doesn’t help I was walking around huge hospitals in my diaper from being post partum, lack of sleep and truly in survival mode. We ended up taking a wheelchair from the hospital garage and wheeled over to a hotel after we knew baby boy was safe at Children’s and meeting the incredible support team. Best decision ever. Finally slept and came into the NICU to our bundle of love surrounded by stuffies and wearing a knitted hat made by a nurse. We are extremely hopeful and given the confidence of the Boston Children’s team,

Braven will come back from surgery with a stronger heart than ever. As we all know, when muscles tear they come back stronger.

We could use any prayers and thoughts for a successful surgery. & any donations for surgery, hotels, travel and food costs would be helpful.