Baby Victim of GoFundMe Dispute Gets Heart Transplant

— -- The Knickerbockers went to the hospital in the middle of the night to give their 5-month-old son one last cuddle before his heart transplant surgery.

"We held him and loved him and snuggled him," Tyler Knickerbocker, 23, told ABC News. "He was really smiley, in a really good place to go into the transplant."

Baby Noah was born with aortic valve stenosis and needed a new heart to survive. His parents, Rachel and Tyler Knickerbocker, had been living at a Milwaukee Ronald McDonald House more than an hour from their Huntley, Illinois, home for Noah's entire life, awaiting the life-saving surgery. They said they recently became victims of a GoFundMe fraud when their family friend created a donation page for Noah, then closed it and did not give them the money.

He said he can do whatever he wants with the money he raised and has donated some to charity.

The Knickerbockers' 24-hour nail-biter started at about 10:30 p.m. on Sunday. Doctors told the Knickerbockers that they'd been offered a heart that was a match for Noah, but because Noah had undergone a blood transfusion, they weren't sure if they could do the surgery. So the couple anxiously waited until 2 a.m., when doctors decided it was safe to perform the transplant.

"The time between knowing and not knowing was just ungodly," Tyler Knickerbocker said.

The surgery began long before dawn and finished up in about seven hours, he said. It was at least three hours shorter than expected, and everything appeared to be going smoothly.

Before the Knickerbockers could see Noah in recovery, doctors found that Noah had a blood pocket and needed to be opened up again for more surgery.

Doctors didn't close Noah's chest cavity until this morning, but the Knickerbockers got to see him anyway. Though Tyler Knickerbocker said Noah's coloring looked good, he said it was hard to see his little boy with his chest open.

"It's honestly very, very scary," he said. "It's a terrifying thing that we've been going through this since last May. It's been a long, rough road."

The Knickerbockers said they recently became victims of a GoFundMe fraud when a family friend created a donation page for Noah, collected as much as $6,500 and then closed it without giving them any of the money, which they’d hoped to use to lessen the financial burden of staying in Milwaukee to be near Noah. The man who created the page, Ken Wills, told ABC News he sold some of his own property to raise the funds and could, therefore, do whatever he wanted with the money. ABC News has confirmed that Wills donated some of it to charities that provided services to Noah and his family, but he says he will not give any of the funds he raised directly to the Knickerbockers.

Between 200 and 300 children younger than a year old receive heart transplants every year, according to data from the Organ Procurement and Transplantation Network, the organization under contract with the federal government to allocate organs. Of the 24,383 heart transplants performed nationwide in 2014, 229 occurred in children younger than a year old.

Rachel Knickerbocker, 21, said she's feeling better now that Noah's chest is closed, but she'll be on edge until Noah is through his critical recovery period. She's worried about the next 72 hours and then the next several months.

"We're just happy we got through the transplant successfully," she said. "Now, we just want to get through the recovery successfully."

Between 200 and 300 children younger than a year old receive heart transplants every year, according to data from the Organ Procurement and Transplantation Network, the organization under contract with the federal government to allocate organs. Of the 24,383 heart transplants performed nationwide in 2014, 229 occurred in children younger than a year old.