Like many CDH babies, sweet Abel’s diagnosis was discovered during his 20-week anatomy ultrasound, his parents realizing soon thereafter that their world would be forever changed. However, the fact they would be making enormous sacrifices to ensure the health and happiness of another comes naturally to both Deana and Brad, with Brad currently serving our great country as an active member of the New Hampshire National Guard and Deana pulls double duty as the proud mama to two rescue dogs. But Abel is their first son, their light, their everything – especially their beacon of hope. While sacrifice comes naturally for Mom and Dad, it’s been far from easy as Abel has now been a resident of the Boston Children’s Hospital Medical/Surgical ICU for going on 10 months. Abel’s “Been There, Done That, Got the T-Shirt” list reads like a neonatal medical school finals nightmare: 31 days on ECMO, significant pulmonary hypertension, gallbladder removal surgery, intubation/reintubation six times, a tracheostomy, and to cap it all off he was also diagnosed with Cornelia de Lange Syndrome (a very rare genetic disorder that can cause a range of physical, cognitive, and medical challenges) during his stay.
Abel was born February 22, 2017 and Deana has spent every day at her son’s bedside, while Brad continues to commute to/from Boston to their home in New Hampshire to provide income for the family and take care of their two fur babies. They hope more than anything to be able to take their son home to New Hampshire with them, to get him outside and let him take a deep breath of fresh mountain air. It’s a reality that’s getting closer by the day, as they are currently debating options for discharge from BCH. In the meantime though Mom’s words speak best for themselves:
In the grand picture of how we’ve been affected by our son’s diagnosis, all we can say is we are filled with hope. We know we were chosen to be parents of a little warrior who defies the odds, and who gives us such great reason to value the gift of life.
We’re honored to provide the family a Fore Hadley Angels in the NICU grant to assist in Abel’s ongoing recovery. Fight On Warrior Abel, Fight On Indeed!!
About the Fore Hadley Angels in the NICU Fund
Support and proceeds for the Fore Hadley Angels in the NICU Fund will go towards assisting current and future families like Abel’s, by providing financial contributions to assist families with the costs associated with extended, long distance travel and living arrangements. Costs that are often a must to ensure the proper specialty care for CDH babies.