TALLAHASSEE, Fla. (WCTV) – A Tallahassee family has been on the list for a heart transplant for their baby since last summer.
Benjamin Nelsen was born on August 31 with a congenital heart defect.
February 7-14 marks Congenital Heart Defect Awareness Week. February 14 is National Donor Day.
Tiffany Nelsen discovered her son’s heart condition in June when she was six months pregnant.
“The lower right ventricular cavity of his heart did not form properly. He’s not able to move blood from his heart to his lungs,” Nelsen explained.
The night Benjamin was born, he was sent from the NICU to the Pediatric Cardiac ICU, where he has been ever since.
“He actually stopped breathing coming up here, so they basically saved his life the night he was born,” Nelsen said.
Benjamin was intubated several days after birth; his parents couldn’t hold him while he was on a ventilator. Shands’ doctors twice tried to put a blow to his heart when he was two weeks old, but both efforts failed.
They then used a shunt and put Benjamin on a ventricular assist device, or VAD.
“It was surgically implanted in his heart, and it’s a machine that keeps his heart moving and his blood flowing. That’s basically why he’s alive,” Nelsen said.
During his short life, Benjamin had two strokes and multiple seizures.
Tiffany Nelsen said that while Benjamin is a good eater, he is also currently using a feeding tube to ensure he gets his medication.
Benjamin also contracted COVID-19 in early January and had a picc line and a skin infection.
“Apart from God, there’s no reason he’s come this far,” Nelsen said.
Benjamin has spent his entire life at Shands in Gainesville. Her family moved from their newly purchased home in Buck Lake to a home 45 minutes from the hospital.
Nelsen said Benjamin’s three-and-a-half-year-old sister Marjorie likes him, although she’s only been able to see him in person a few times.
“Every day we video call her, and she sees Benjamin and tries to talk to him,” Nelsen said.
However, even the best of times comes with heartache for the family.
A “hero heart” for Benjamin, as they call it, would mean a different outcome for someone else.
“The reality is that for my son to live, another baby won’t,” Nelsen said. “It was such a source of sadness. Sadness is an understatement.
Tiffany Nelsen’s sister Cassidy Hettema has been part of her support system.
“She’s the person I’ve texted or called when things seemed too difficult,” Nelsen said.
Hettema said she uses “presence theology” to help her sister.
“I think when someone’s in a tough place, they’re not going to call you up and say, ‘I need dinner tonight. I think it’s all about finding those ways to say, “I can do this, this, or that today, pick one!”
Hettema said she also drew strength from her own daughter, who is in Marjorie’s preschool class when the Nelsens are in Tallahassee.
“Every time she prays, it’s in the future or the present, like, ‘Thank you God for giving Benjamin a heart.’ It’s just gonna happen, in his little mind, like his world is so certain. It really encouraged me,” Hettema said.
Hettema led fundraising efforts for the Nelsens.
Benjamin is part of the Children’s Organ Transplant Association.
Donations to his fund cover everything from relocation costs to medical bills.
“We are truly touched by the love from strangers,” Hettema said. “It’s been such a blessing because unlike other fundraising platforms, every dollar goes directly to them. COTA covers all of these expenses like a credit card transaction; it doesn’t touch the family.
“I don’t know how people do that without a support system,” Nelsen said.
The Nelsens are having a fundraiser on February 23 at Jeri’s Midtown Cafe. 15% of the profits will go to Benjamin’s fund.
You can follow Benjamin’s journey on his COTA page here, or on Facebook here.
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