ORLANDO, Fla. – One in 100 babies will be born with a heart defect that requires special monitoring and possible surgery -- and keep in mind, this is for some of the tiniest patients.
When a Winter Haven family found out their newborn needed cardiac care, they sought treatment at Nemours Children’s Hospital for their son’s unexpected diagnosis.
The Crews family called it a “lifelong battle” for their son Carter, which began in September 2019.
“He got the cord wrapped around his neck, and so when he came out, he was blue, and I really didn’t understand what that meant at the time,” Joanna Crews said.
Carter was given oxygen and taken to the neonatal intensive care unit, often called the NICU.
“I was like, if you’ll just let him rest, he’ll be OK -- that’s what my mom heart wanted to be true,” Joanna Crews said.
After several tests, cardiologists determined Carter had a Congenital Heart Defect (CHD) and needed to be transferred to Nemours Children’s Hospital in Orlando.
“So, taking that ride, we knew it was a much more serious situation,” said Mickey Crews, Carter’s father.
The family spent a month in the hospital, with their newborn and his 5-year-old sister Isabella. Both parents credit the nurses at Nemours and the Ronald McDonald House for taking care of the whole family during Carter’s treatment.
“(Isabella) remembers our time in the hospital as a fun adventure, and that is awesome,” Joanna Crews said.
Just days after being released from the hospital at 1 month old, Carter experienced another major breathing scare at home, and his mother performed CPR while waiting for paramedics.
“Having to perform CPR on your own child -- I don’t wish that on anybody,” Joanna Crews said.
The Crews returned to Nemours and Carter’s cardiologists diagnosed him with malignant vasovagal syndrome, and said he needed surgery for a pacemaker.
In all, the family spent about four months in the hospital, and Carter went through four surgeries.
“He may have surgery one day to fix his heart defect, but he’ll never not have CHD, you know,” Joanna Crews said.
Carter is one of three patient ambassadors for Nemours during the month of April.
He has made huge strides since his stay at Nemours, and recently started walking.
“He would not be here today if it wasn’t for them,” Joanna Crews said. “I believe that with every fiber in my being.”