Our son, Benjamin Matthew, was born on 8/31/2021. We were only able to hold him for a few minutes before he was whisked away to the NICU, and ultimately the Pediatric Cardiac ICU (PCICU). It would be several hours before we could see him, and several days before we could even hold him. Prior to his birth, Benjamin was diagnosed with a hypoplastic right heart. This means that the lower right valve of his heart didn’t form correctly and his heart is unable to pump blood adequately for his body.
Benjamin’s first two weeks on the “outside” were tumultuous. He stopped breathing a few hours after birth, and had to be intubated. He spent the first days of his life on a ventilator as doctors tried to determine the best possible path forward. A team of pediatric cardiologists tried on two separate occasions to place a stent into his heart in an effort to keep his PDA valve open, but neither attempt was successful. After a great deal of deliberation, his medical team (which consists of 25+ doctors and other medical professionals) concluded that the safest path forward for Benjamin would be a Ventricular Assist Device (VAD)/Berlin Heart and to list Benjamin for a heart transplant.
At two weeks old, Benjamin underwent open heart surgery to place the VAD and was simultaneously listed for transplant. The VAD essentially functions as a backup heart if/when his physical heart requires extra support. He will remain on the VAD until transplant time. Additionally, Benjamin will remain inpatient at Shands in Gainesville until transplant.
The average wait time for a pediatric heart transplant is 7 to 8 months. Due to Benjamin’s inpatient status at Shands, the rest of the family has relocated to Gainesville from Tallahassee for the foreseeable future. We have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses. Please consider donating to COTA for Benjamin’s Hope.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.
Mary and I are committed to praying both for the timing and the appropriate heart for this precious little one. I am the recipiant of bilateral cornea transplants and forever humbled by a donor’s kindness in loss resulting in my gift of 20-20 vision.
My daughter, Kayla now 25, received 2 bone marrow transplants by the age of 4. She was diagnosed with Non Hodgkin Lymphoma at 26 months. I will be praying for Baby Benjamin and his family. Keep the Faith, it a long journey and one where you feel so helpless but you will bring Him home soon.