Constable: Money gone, but new heart arrives
Sunday got off to a bleak start for Tyler and Rachel Knickerbocker of Huntley. Not only was their baby boy, Noah, enduring his fifth month in a Milwaukee hospital and still desperately waiting for a new heart, but the story of how $6,500 in donations for the boy had vanished was about to go viral on ABC's “Good Morning America.”
“We have so much going on already. Do we really need that, too?” an exasperated Rachel Knickerbocker, 21, told ABC while explaining how a relative misled them and wasn't turning over the money.
Then things took a turn.
“Sunday night about 11, they told us, 'We have an offer,'” says Tyler Knickerbocker, 23. The transplant team at the Children's Hospital of Wisconsin had found a potential donor. But doctors couldn't accept the heart unless lab tests could make certain the organ would be a good match.
“About 1:30 or 2 o'clock in the morning, they told us and got him ready for surgery at 4 a.m.,” Tyler Knickerbocker remembers. “We went and spent time with him, and held him, and cuddled him, gave him all the love we could.”
Warning the parents that the surgery might take 10 hours or more, doctors finished the heart transplant in a little more than seven hours. A pocket of blood formed in the baby's chest the next day, so doctors had to reopen the incision and fix that problem. They closed up Noah's chest on Tuesday morning.
“He's doing good. The transplant went very well,” says the happy dad, who adds Wednesday evening that doctors expect Noah to be breathing on his own in a couple of days. Knickerbocker also admits that he wasn't so calm during the transplant surgery. “I've never been so terrified and so happy at the same time,” he says.
Thankful for the opportunity to live with families in similar situations across the street at the Ronald McDonald House during the five months Noah has been hospitalized, the Knickerbockers understand the sorrow that led to their joy.
“Can't stop thinking about our donor family. What an amazing gift they gave at such a heartbreaking time. Praying for you always,” Rachel Knickerbocker posted on her Facebook page.
“We just keep praying for the donor family and their loss,” Tyler Knickerbocker says. “We thank them because they gave our son another chance at life. I can't even put into words how grateful we are.”
He grew up in Crystal Lake and met his future wife, who grew up in Lake in the Hills, when he was just 14.
Their firstborn, Nathan, who turns 3 on Jan. 28, has become the “mascot” of the Ronald McDonald House since the family gave up their home in Huntley to live near the hospital. “We love this place,” Tyler Knickerbocker says. “I don't know where we would be without this place.”
Before his birth on Aug. 5, Noah already had undergone his first heart surgery. Just 22 weeks into the pregnancy, an ultrasound discovered an issue with Noah's heart, and two weeks later the family heard the dire diagnosis.
“The doctor gently told us 'your baby is very sick,'” Rachel Knickerbocker wrote in an online summary. The parents were forced to learn terms such as “critical aortic stenosis with evolving hypoplastic left heart syndrome, coarctation of aorta, and severe mitral valve regurgitation.” They were told Noah might not survive the pregnancy, or might die soon after birth.
But on June 5, Rachel Knickerbocker underwent a fetal-intervention surgery at Boston Children's Hospital, where doctors successfully inserted a balloon into Noah's aortic valve to improve blood flow. Still facing a high-risk pregnancy, the family moved to Milwaukee to be near the Children's Hospital of Wisconsin.
“It was the worst time of both of our lives,” says Tyler Knickerbocker, who gave up his jobs working for a friend's construction business and buying cars to repair and sell. “We have a hard time even when I am working.”
Rachel's parents, who live in Huntley and Algonquin, helped them out financially and gave them a place to stay, Tyler Knickerbocker says. His brother took in the family dog, Capone. His mom, other relatives and friends chipped in. Tyler Knickerbocker's godfather from Colorado established a GoFundMe crowdsourcing account to raise money for Noah.
The Knickerbockers say they planned to use that money to rent a house across from the hospital. Tyler Knickerbocker says that after some “family drama” during Christmas, his godfather shut down his GoFundMe account and posted images of checks on his Facebook page suggesting he donated $2,500 to the Ronald McDonald House, $2,500 to the Children's Hospital of Wisconsin and $1,000 to Boston Children's Hospital.
But ABC reported that those charitable groups received no donations or a fraction of that amount. ABC News reported that the godfather accused the Knickerbockers of “greed,” said he sold items to help raise that money and is free to distribute funds the way he wants.
The Knickerbockers lodged a complaint with Colorado officials. In the meantime, a new GoFundMe.com/NoahJordan account established by the Knickerbockers had raised $11,815 by Wednesday afternoon. Old links on the godfather's Facebook page now send people to that new account.
“It's honestly been a blessing after a blessing after a blessing and a blessing and a blessing,” Tyler Knickerbocker says in recounting the good news that has followed the bad. In December, Noah took a turn for the worse and had to go back on a breathing tube. Now the family is hoping he'll soon be strong enough to have the feeding tube removed and eat through his mouth for the first time.
“Before his transplant, we spent five months and four days with no end in sight,” Tyler Knickerbocker says, recalling the uncertainty hanging over the family. “Before, it was, 'Is he going to make it today?' Now, it's, 'I would love to go back to work.' I can't change anything. All I can do is be there for both my kids. God won't give us anything we can't handle.
“Noah is the one doing all the work.”