Our son, Barrett has a complex Cognitive Heart Disease (CHD). At 22 weeks in utero, it was revealed to us that Barrett had severe issues with his heart that ultimately would require surgery within his first week of life. There was much uncertainty, not knowing all the circumstances, the risk, and the outcome of his condition. As CHD was new to my husband and I as our other 2 children are healthy and have no signs of CHD, there is no family history of it, it was extremely difficult to digest why this was happening to us and our son that was soon to be born. Throughout the rest of my pregnancy there were many doctor visits, along with many tests that were performed to monitor Barrett’s heart and his growth.
Our local Cardiologist referred us to Boston’s Children’s Hospital for a second opinion to ensure that the diagnosis and plan for surgery was the same, along with to familiarize ourselves with their practice as there was a chance that we would have to deliver in Boston and/or have the surgery performed there. We went to Boston for a consult on December 16th, 2015. We came back home with a lot to consider. We had a follow up appointment with our Cardiologist in Albany on December 29th, 2015. The outcome of that visit determine that we would remain local and deliver in Albany as Barrett would have the same surgery performed either here in Albany or in Boston.
Barrett was born on February 2, 2016 and at 1 day old we were informed that he would need to go to Boston to have his surgery performed. At 4 days of age, Barrett was med flight to Boston’s Children’s Hospital. At 7 days of age, Barrett had his first surgery, BT Shunt performed with a “live vein” hoping that this new type of BT Shunt Surgery will get Barrett out to about 1 year of age before he will require either a Ristelli or Enkida Surgery. Barrett is the first candidate to have this type of BT Shunt surgery so the outcome of it and how it will perform will be a learning experience for all. If this BT Shunt surgery doesn’t perform as they are anticipating then Barrett could potentially have another BT Shunt surgery prior to the Ristelli or Enkida.
This is going to be a long life journey for our family and Barrett our fighting Braveheart. There will be several trips to our local Cardiologist and to Boston to monitor him as he grows and gets older along with multiple surgeries throughout his life.
We will be utilizing the money donated for medical bills, transportation, food and accommodations for our stays in Boston. As the medical bills are currently trickling in, it becomes stressful as to how we will manage to pay for our portion that is not covered by the insurance. Then to think about the travels that we will be making and providing the funds for those, it becomes a lot to digest. We are extremely grateful to all for the support that each and all provide us as we go through this life journey! Our hearts go out to all families that are dealing with CHD, it's a long unknown journey and we are just in the beginning of it.
With Love, a sincere thank you for all of your kindness, support, thoughts, prayers and donations! God bless you!
Team Barrett the fighting Braveheart
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