Michael DeRise rolled around the living room floor of his family’s Bethpage home Thursday, playing with his toys and occasionally spouting “Dada.” Although too young to understand it now, Michael, who celebrated his first birthday on June 11, has a special piece of his dad inside of him.
One that very well may have saved his life.
Seeing their baby crawl, play and babble is a sight that Karen and Jon DeRise do not take for granted. Less than five months ago, Michael was so weak and malnourished that he could barely lift his head. His skin was so jaundice, Karen DeRise described it as “fluorescent,” and at only 12 pounds, he had stopped putting on weight.
Doctors had warned the couple that this could happen when their son was diagnosed at 6 weeks old with biliary atresia, a life-threatening condition that impacts one in every 10,000 infants, according to Michael’s pediatric gastroenterologist, Dr. Debora Kogan-Liberman. Babies who suffer from biliary atresia do not have normal openings in the bile ducts of their liver, so the bile — which carries waste and toxins out of the body — becomes trapped, builds up and leads to scarring, loss of liver tissue and cirrhosis.
Michael underwent a procedure in August 2012 in an attempt to temporarily correct the problem, but it was not successful.
“The existing liver could not be saved,” said Michael’s surgeon, Dr. Dominique Jan, chief of pediatric surgery at Children's Hospital at Montefiore in the Bronx.
Michael was placed on the transplant list in January, but the DeRises decided to take matters into their own hands by opting to use a “living donor.”
“We weren’t going to take months or years waiting for something that may never come,” said Jon DeRise, 37, a New York City Police Department officer. “I knew I was as healthy as can be and could provide him with the gift of the life.”
After Jon DeRise underwent two days of medical testing and psychological screenings, a team of surgeons at Montefiore operated on him on March 6, removing a 10-centimeter piece of his liver. Then, a separate team whisked Michael out of his mother’s arms and into surgery, where Jan placed it into the baby’s abdomen.
Within 10 days, the donated piece of liver shrank to fit inside Michael’s small body, Jan explained, and he could then close his incision. What remained of Jon DeRise’s own liver has since regenerated to its normal size.
“The liver is a fascinating organ for transplantation,” added Jan, who has been performing liver transplants using living donors since first witnessing the procedure in Germany in 1991.
It can take anywhere from six months to a year after a transplant surgery for the body to reject the organ, he said, but so far, Michael is doing extremely well. Within 48 hours after the surgery, his skin color started to improve, and after a week, Karen DeRise, 40, noticed her son gaining weight and becoming more playful.
“For the first time in his whole life he was able to drink a bottle and have it actually go into his stomach,” she said.
Michael, who is now a healthy 18 pounds, is rolling, crawling, sitting up, trying to stand, and stealing his 3-year-old brother Thomas’ toys.
“It’s a different baby,” said Kogan-Liberman, who continues to monitor Michael closely through bi-weekly checkups.
Michael must continue to take daily immunosuppressant medications and vitamin supplements, but his doctors say in the future, he might be able to be weaned off these drugs.
“I’m happy he can have a normal life now,” said Jon DeRise.
The “unimaginable pain” that Jon DeRise felt post-surgery has long subsided and after about seven weeks, he said, he finally felt like his normal self again. He’s back to work, limited to desk duty for now, and his 8-inch scar is the talk of the locker room at his police precinct.
Although friends and family members have been calling him a hero, he says, “I don’t feel noble or heroic. It’s just what fathers do for their sons.”