Nineteen-year-old Joshua has been a patient at Boston Children’s Hospital his entire life. Born with hypoplastic left heart syndrome, a congenital heart disease, Josh required five open-heart surgeries along his journey, and on Aug. 4, 2014, he received a heart transplant. Four months later, family members gathered for Thanksgiving dinner, each giving thanks. When it came time for Josh to speak, he said, “I am thankful for my new heart, and I am thankful to give it a very good home.”
Josh’s mom Barbara shares the family’s extraordinary journey.
My husband Mike and I will never forget the feeling of excitement we had the morning we were finding out if we were having a boy or a girl. It seemed like we had to wait an eternity, wondering whether we’d hear the words “it’s a boy” or “it’s a girl.”
Finally, the time came — and our nurse let us know we were expecting a BOY! After screeching from excitement and smiling from ear to ear, we quickly realized something was wrong.
Our doctor had noticed the left side of our son’s heart was noticeably smaller than the right, a sign that he had a condition called hypoplastic left heart syndrome, or HLHS. With HLHS, the left side of the heart is underdeveloped and unable to properly pump blood.
That day, our world immediately changed. Our minds were racing in every direction, and it seemed like we were literally living in a nightmare. We had plans of shopping for baby clothes and celebrating over a nice lunch, and instead we were meeting with doctors all afternoon and uncontrollably crying. It was this night we named our son “Vincent” (Vinny for short), which means “to conquer.” We needed a strong name for a boy who needed to overcome so much.
“You want a hospital with the best technology and the best nurses and doctors in the country. You expect that, and you expect it to be clean. Boston Children’s has all of that,” says Lisa Findlay, a mom from Hayden, Idaho.
“What made the difference was how much everyone loves these kids. Everyone who walked into Aaron’s room, from the surgeons to nurses’ aides to janitors and child life specialists, was on a mission to help Aaron.”
From the time he was born, Aaron encountered one medical challenge after another.
He was born with hypoplastic left heart syndrome (HLHS), a serious congenital heart defect. By the time he was three years old, Aaron had undergone three surgeries, suffered a stroke and was diagnosed with Factor V Leiden, a blood clot disorder. The stroke left him confined to a wheelchair and caused cognitive impairment. Aaron also developed severe scoliosis.
By age 16, he was a veteran of children’s hospitals from Washington to Texas. …
When we first learned that our son would be born with Hypoplastic Left Heart Syndrome, we were devastated. But once the shock had worn off we were desperate to talk to other families who had been through the experience. We asked our doctor about support groups, but he was less than impressed with what was available.
“They’re out there, but it’s mostly propaganda,” he said, scrolling through a Google search of HLHS communities. “Regardless of what you may read, these kids can’t run and they can’t do sports.”
And while he wasn’t impressed with what Google had to say about the future of kids with HLHS, he was impressed with what Boston Children’s Hospital’s Heart Center could do for children with the condition—and I’m so glad he was. Through his referral we went to Boston, and there we found the hope we needed. It was there that we learned that our son had a good chance of having an extraordinary quality of life under their care. We were also told that other than contact sports, our son could do anything he wanted to.
Over the years Lucas continued to thrive. And for each year he got stronger we participated in the NSTAR walk for Boston Children’s Hospital. It’s our way to say thank you to the hospital that saved him, and to help fund additional research, particularly in the areas of congenital heart defects that affect 1 in 100 babies born every year. …