Hello we are the Hayes family and this is our story.
Our son Vincent (V-Man) was born on 9/2/2019 with a birth defect called Gastroschsis, at Duke University Hospital. This is a condition where his intestines were found outside of his body, due to the abdominal wall (belly) not closing. For Vincent’s case, this meant his intestines (large and small) were exposed to the amniotic fluid since he was 12 weeks. The doctors reassured us that “this is the best birth defect to have” because outcomes are so favorable in the U.S.
Josh and I, were thrilled that this was nothing life threatening. We expected a quick surgery after birth, at most a month stay in the NICU and we would be bringing our baby home as soon as he could handle processing food. It wasn’t until Vincent was born that we knew the extent to which his intestines had been damaged, from not being protected in his body. We were told the outcomes were not favorable for Vincent on day 3 of him being alive.
As a family we were given the option to make Vincent peaceful and comfortable, because some parents choose palliative care (relieving pain without dealing with the cause of the condition) or operate to try to improve his condition and save his life. It was an easy decision for us to make mentally, “Save our child’s life” we weren’t ever expecting to be asked that question.
When we made the choice to save Vincent’s life, we never knew the extent of the journey we would be on, to keep our new family of 3 whole. At less than 30 days old, V-Man:
Has spent every day in the NICU
Has conquered 2 emergency surgeries
Has lost 95% of his small intestine and 33% of his large intestine
Has developed SBS (short bowel syndrome)
Has rode in an ambulance
Has flown on a jet plane
Has traveled to a new state
Has become quite the “ladies” man with the nurses
Has been blessed by so many positive thoughts and prayers.
Vincent has a very uncommon and one of the most extreme cases of gastroschisis, that Duke had ever seen. On average it is estimated that babies with gastroschisis, spend about 41 days in the hospital with an average bill for a short stay of $124,000. Vincent is estimated to spend 120 – 180 days or 4-6 months. At Vincent’s current state, he is unable to get nutrition to his body by normal means. He can’t process anything orally (no breast milk or formula) and only gets nutrition (to stay alive) through an IV called TPN.
Due to Vincent’s extreme condition, with a lot of his outcome being unknown, it was agreed by us and Duke, that it was best to transfer his care to a specializing hospital. At Cincinnati Children’s hospital they specialize in the rehabilitation process for short bowel syndrome. We are confident that Vincent’s care being here, he has a better chance to get the help he needs to come home.
That being said we have been asked countless times throughout this process, what do we need or what people could do to help out. At the time we didn’t know what our family would need, because we weren’t aware of where this journey was going to take us. We now humbly ask for any and all willing to help with donations.
All donations will help with the hospital bills that have come thus far and will continue to come. With Vincent being transferred, donations will help with:Initial transportation
- Ambulance and life flightHotel expenses
- Until we can get a room at the Ronald McDonald House (currently on a 31 plus day wait)Traveling expenses
- Help allow Josh to travel from NC to OH once or twice a monthOther
- The cost of maintaining our temporary “home” and needs while living in Ohio.
- Any remainder of the donations received will go to the continuity of care he will need once he comes home.
We’d be forever grateful to you if you find it within your hearts to help our family. Any donation is appreciated. If unable to donate and you want to help, Please share our story and our post.
Thank you for helping us be “V Man” Strong and support our little super hero.
Everyone who has called, text or messaged us on social media. The prayers and kind words have given us strength to fight for Vincent. Those gestures are greatly appreciated beyond words. We love you all and are in awe of the kindness of people.
The Hayes Family