Bobby’s Story

Erin MallisACPA Family Services, Community Stories, Fundraising

Bobby was born five weeks early, and to our surprise, he was born with a cleft lip and palate. We were immediately transferred to the NICU at Hasbro Children’s Hospital to get the extra care he needed.

Bobby stayed in the NICU for five days. Upon discharge we learned Bobby failed two hearing tests. A third test was performed which showed his ears were filled with fluid due to the cleft lip and palate. Gaining weight was also a struggle for him. I breast pumped and mixed in formula for extra calories. We had a visiting nurse come to our home twice a week, early interventions twice a week via Skype, GI visits, speech, increased appointments with his primary care doctor and saw an ENT. Bobby finally started to get on the right track and was thriving.

At about eight weeks old he caught a cold which landed us back at the hospital, losing all the weight he tried so hard to gain. A GI tube was in discussion at this point, but thankfully changes in his formula and medication worked. After fighting the cold, Bobby began to thrive again.

Bobby had his first surgery for his lip repair in October 2020. He did amazing! He drank more than he ever did within hours after surgery. Shortly after recovering from surgery, he was discharged from all services he was receiving. Despite all the challenges, he smiled the whole time!

Bobby just had his second surgery on June 22, 2021. His doctor discovered that he was missing bone in his palate. Because surgery took longer than expected there was a chance of increased swelling, which is exactly what occurred. When I was finally able to see him in recovery, his breathing was very course. I could hear all the fluid being built up due to the swelling in his mouth. We spent six hours in recovery while doctors discussed next steps. Finally, we were admitted to the PICU for extra care. Within a couple hours he was starting to seem like himself. We were discharged the next day.

Two days after surgery, Bobby caught another common cold. With his mouth already swollen from surgery and unable to breathe through his nose, he was again admitted to the PACU. Thanks to the excellent care and medications, Bobby’s breathing was much better, and we were discharged the next day.

It has been two weeks since surgery and despite what he went through, he’s doing great! The ACPA Approved Team at Hasbro Children’s Hospital in Rhode Island is amazing. We are so thankful for everything they have done for my son.

-Courtney Fanfara

ACPA’s Thrive Campaign seeks to provide funding for ACPA’s programs and services that support patients affected by cleft and craniofacial conditions, their families and the professionals who provide their care. Your gift will help us create a world where people with cleft and craniofacial conditions thrive. A gift of any size helps make an impact. You can make a one-time gift, small monthly gifts by joining the Care Club, or a leadership gift by joining the President’s Circle. Learn more at www.acpa-cpf.org/thrive.