Like a champ, Nathan Whitehead smiled brightly as he re-entered his Mokena home for the first time since June.
Then, like a 6-month-old, he burst into tears.
“He’s hungry,” said his mom, Christina Whitehead.
Tears of hunger from their son are a welcome sign for Christina and her husband, Rob, who watched their newborn inch too close to death’s door in recent months.
“It’s been a roller coaster. An emotional drain every day not knowing what’s going to happen next or what they’re (doctors) gonna say,” Christina said. “We’re so happy to have him home.”
And then, just like babies are known to do, Nathan caught his mother’s glance, stuck out his tongue and smiled ear to ear, kicking his blue and white Velcro Nikes furiously.
Nathan was born March 2 with a rare and aggressive liver disease. Though doctors at Lurie Children’s Hospital in Chicago still don’t know exactly what caused the scarring, or cirrhosis, that threatened to shut his body down, they did know that his only hope for survival was a liver transplant.
That came Aug. 3, “in the nick of time,” Rob said.
Dr. Saeed Mohammad, an assistant professor of pediatrics at Northwestern University Medical School and an attending physician at Lurie, said Nathan’s post-op course has been somewhat routine.
“He was pretty sick going into transplant, but he recovered pretty well,” Mohammad said. “The road ahead looks good.”
He said Nathan will make frequent trips back to the hospital for follow-up exams, but those will decrease over time.
“One thing he needs to work on now is feeding to gain weight,” the doctor said.
Though the recovery brought new issues, including problems with clotting and a second surgery to completely close Nathan’s incisions once all the fluid had drained, the worst part was waiting for a donor, Rob said.
“We were so worried. We didn’t know what to think,” he said. “We didn’t know if he was going to make it. Those last two weeks before the transplant, he wasn’t even smiling anymore. That’s when we knew it was really bad.”
After a stream of potential living donors were tested, it was a deceased donor who saved the baby’s life.
Mohammad said it speaks to the need for organ donation.
“Nathan’s an example of how a transplant can change a child’s and a family’s life,” he said. “Their whole world has changed in the course of two months.”
He emphasized that for every child like Nathan, there are two or three on the waiting list.
Nathan’s prognosis is good, the Whiteheads said, but there will always be concerns, such as his body rejecting the new liver, infection and side effects of the medication. For now, he wears a nasogastric tube through which his parents administer his 12 daily medications, which include steroids and immunosuppressants.
“He has to take his anti-rejection meds every day at the same time,” said Christina, who has decided not to go back to work for at least a year or two so she can be his primary caregiver.
Rob, who works for Waste Management, returns Oct. 1.
Meanwhile, they are eager to get their blended family — including their other children, Natalie Kitakis, 5; Robbie Jr., 5; and Richie, 4 — back to a normal life.
Nathan also will receive physical and occupational therapy, and Christina said she works with him constantly to learn “normal 6-month old” skills such as sitting up and rolling over.
“He’s doing better, he rolls over halfway,” she said. “We notice that he’s getting stronger, and his liver numbers are great.”
She acknowledges that there are a host of concerns and potential problems that will follow Nathan the rest of his life, but for now, she said, “look at him, he’s so happy. I don’t think he’s ever felt this good.”
There is a GoFundMe account (www.gofundme.com/SaveNathan) for donations, and the family invites people to like their Facebook page — Saving Baby Nathan (www.facebook.com/SavingBabyNathan?fref=ts) — so they can follow the family’s journey.
@dvickroy