Baby Receives New Liver in the Nick of Time
Tuesday, May 27, 2008
Late last summer, Hallie's name went on the top of the liver transplant list.
Victor residents Jodi and Jeff Engebrecht knew their daughter, Hallie, was small for her age—at 2 months old, she only placed in the 25th percentile on the weight charts. Up to that point, Hallie’s pediatrician had thought the problem—failure to thrive — likely stemmed from nursing complications.
However, the Engebrechts soon learned something more was at work.
“At her 2-month checkup, Hallie’s doctor saw her eyes were turning yellow,” Engebrecht said.
Alarmed, Jeffrey Eisenberg, M.D., of Fairport Pediatrics, ordered tests and blood work to be done; the results pointed to Hallie suffering from biliary atresia, a condition in which her liver held onto bile rather than drained it. Without the help of the bile, her small intestine could not digest fat the way it should and, if untreated, might lead to liver damage and cirrhosis.
Hallie was immediately admitted into Golisano Children’s Hospital, where she underwent a surgery called the Kasai procedure to create artificial bile (drainage) ducts from her liver to her intestine. Surgeons also removed her gall bladder and appendix and fixed a malrotation of her intestine (if a normal intestine made an ‘S’ shape, Hallie’s made a backwards ‘S’).
But Hallie wasn’t out of the woods: six days later, she suffered a bowel obstruction, needing more surgery.
“The recovery after the second surgery was the hardest for all of us,” Engebrecht said. “She had acute problems with her blood pressure afterward, and she recovered so much slower than she had the first time. Still, the intensive care team answered all our questions, assuring us they had a plan for her.”
Hallie left the hospital May 7, knowing that the Kasai procedure would only buy time — no one could tell how long it might help.
“She was home, gaining weight, for about two and a half months,” Engebrecht said. “But in the middle of July, she turned yellow again.”
A couple of weeks later, Hallie returned to the hospital with high fever and her stomach abnormally protruded with fluids from her failing liver.
On August 2, her name went on the top of the liver transplant list.
“Nationally, there are only 400 to 500 kids on that list. It isn’t that common for pediatric patients to have liver problems, so when they do, they are given priority,” said Adel Bozorgzadeh, M.D., director of transplant services at Strong Memorial Hospital and Hallie’s transplant surgeon.
Jeff and Jodi had their livers screened as possible matches for their daughter, but both were too large to transplant into little Hallie’s body. Their 19-year-old son Kyle had a successful screening, but due to the intensity of the surgery and recovery, Bozorgzadeh suggested Kyle only be a last resort.
While the family waited for an alternative liver, they controlled Hallie’s digestive troubles with medications. She was uncomfortable, but her liver functioned enough to keep her going.
“She was on a lot of Motrin,” Engebrecht said. “And we always knew when she was due for another dose.
She wasn’t eating well and she wasn’t gaining weight because her liver was getting big and hard, which made it hard for her to fill her stomach up.”
Finally, relief for baby Hallie came. On December 2 — exactly four months after she went on the donor list—she had a liver transplant.
“On the night I found out there was a liver available, I flew on a small plane, in a snow storm, to New York City, to retrieve it,” Bozorgzadeh said. “I came back to operate immediately. It was tiring, a real marathon session, but I’d do it 100 times every day, if I could.”
On Christmas Eve, Hallie returned home.
“She’s our family’s Christmas miracle,” Engebrecht said.
She and her husband speak highly of the team of doctors and nurses at Golisano Children’s Hospital.
“I just can’t express how terrific they are,” she said. “Everyone was so warm and caring, they really loved Hallie. The nurses gave her Christmas gifts, and even I got lots of hugs. And Dr. Bozorgzadeh — he’s my hero.”
The admiration is mutual; Bozorgzadeh keeps pictures of Hallie on his cell phone.
“This is one of the joys of coming to work,” he said. “I run into angels like Hallie, I meet such committed families like hers.”
Today, Hallie is thriving. Thanks to a physical therapist, she is learning to crawl. She returns to the hospital every week for blood work, and to see Bozorgzadeh twice a month.
“She knows everyone. The nurses come over to say hi to her, and she’s all smiles,” Engebrect said.
That kind of courage is remarkable. As Bozorgzadeh put it best, “Hallie is the essence of what miracles are about.”
25th annual Children’s Miracle Network Telethon on 10NBC
Hallie, along with five other Miracle Kids and their families, will be honored during Golisano Children’s Hospital’s 25th annual Children’s Miracle Network Telethon on 10NBC. Set for Sunday, June 1, this year’s telethon will broadcast live from the Strong Memorial Hospital Lobby, 10 a.m. to 1 p.m. and 7 to 11 p.m. Viewers can expect stories of bravery, medical miracles and the power of family, and can help the hospital by phoning in gifts to (585) 241-KIDS (number is only operational during the event).