On November 21, 2011, after seven years of trying for a baby and three miscarriages, Maxwell Cooper Berrios came into this world. His
first breath took his parents' breath away, but their excitement was put on hold when just minutes after birth Max was diagnosed with hypospadias and an imperforate anus. These were two correctable birth defects, but they required Max to undergo surgery at less than 24 hours old. It wasn't until he began his recovery in the NICU that the doctors began noticing signs of severe and life-threatening heart and lung defects.
Max was diagnosed with pulmonary hypertension, pulmonary vein stenosis, a large atrial septum defect, as well as other congenital heart defects. Pulmonary vein stenosis (PVS), the most rare and severe of the defects, causes progressive blockages in the blood vessels that bring oxygen-rich blood from the lungs back to the heart. With the inability to control the veins from becoming completely blocked, PVS has an exceptionally high mortality rate. Max was originally sent to UNC Children's Hospital where the doctors, unfamiliar with this rare condition, gave him only a few months to live.
Devastated, Max's entire family mobilized to help find a hospital that would take on such a difficult case. It didn't take long for Children's Hospital of Boston to rise to the top of everyone's list. On February 13, 2012, Max was flown by air ambulance to Boston where underwent open heart surgery three days later to repair his pulmonary veins and other heart defects.
Max is now part of a cutting-edge study that uses chemotherapy drugs called Gleevac and Avistan to help slow the PVS from obstructing his veins. The goal is to slow the disease enough to give him time to grow out of it and to avoid receiving a lung transplant, which would only be a short-term solution.
On his first trip, Max spent 8 weeks in Boston and was able to come home in April. With countless doctor's appointments, medications and a feeding tube, Gina and Matt, had their hands full. Gina had to take a leave of absence from teaching to take care of Max while Matt started a new job to help cover the mounting hospital bills. April was Max's only month at home with his parents. In May, Max was in and out of Duke Hospital for stomach and respiratory problems, and he was flown back to Boston in June after going into heart failure.
For the past five months, Gina has lived in Boston in a converted college dorm room for parents with children in the hospital. Matt has had to continue working in North Carolina to pay their mortgage and medical bills as well as Gina's living expenses. The distance has proven especially hard on the couple who have never spent more than a few days apart since they began dating at the age of thirteen. Despite the obstacles, Matt and Gina have kept their faith and never stopped fighting for their little boy.
To date, Max has undergone ten cardiac catheterizations, been intubated multiple times in the cardiac ICU, undergone countless MRIs, ECHOs, CTs, EKGs, EEGs, lung scans, bronchoscopies and other surgical procedures. BUT, with the recent announcement from Max's doctors that they have finally pieced together his complicated medical puzzle, the family's persistence seems to be paying off.
In fact, Max just celebrated his first birthday! He has proven countless times that he is not only a fighter, but he is truly a miracle! There is no date set for Max and Gina to be reunited with their family in North Carolina, but as long as they have hope, they keep pushing forward. Max has spent every holiday in the hospital, and some without both of his parents. We are hoping to help bring them together for Christmas. We value prayers the most, but even the smallest donation will help this family while they focus on their son during this difficult time. Pray that this sweet baby is on the road to recovery and will not have to endure any more pain.
"For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future." Jer. 29:11