A bright, lively toddler from China receives a second chance at life
Friday, May 13, 2011
The second David and Debbi saw Leah at the hotel in China, they knew she was the child they had been waiting for. “She grabbed us and she never let go,” said Debbi, brimming with tears. “It was the most amazing thing…She knew and we knew that she was always supposed to be our daughter.”
David and Debbi first met their daughter Lenore Isabelle Meiyi McAdam, or Leah, for short, Oct. 1, 2009, in the capitol of her province, Nanning. She lived in an orphanage in the Chinese of city of Guping, located in the province of Guangxi. The gorgeous 16-month-old was happy to meet her new parents, but medically, she was in a poor state. Leah had been born with an imperforate anus, which meant she did not have a hole through which excrement could pass out of her body. Leah could not have any solid foods and the formula and crushed watermelon juice that she subsisted on was very painful to pass out of her body.
“I try not to let myself think about what might have happened to her if we hadn’t been lucky enough to adopt her,” Debbi said.
David and Debbi had chosen to adopt a child with special needs. Before committing to the adoption, they had consulted with Walter Pegoli, M.D., chief of pediatric surgery, about what the course of treatment would be for their new daughter once they returned to the United States. During their two-week stay in China, they emailed Pegoli several times with questions.
About a week after they arrived back to the States, David and Debbi brought Leah to see Pegoli. He took one look at her and said they needed to get her into surgery right away.
“Basically, I had to reconstruct her backside,” Pegoli said.
Pegoli started by doing a colostomy, creating a temporary artificial opening from the colon, the bottom part of the digestive tract. But there was so much backed up in Leah’s digestive tract though that a few days later, Pegoli needed to perform an ileostomy, during which Pegoli made an opening at the end of the small intestine, or ileum. It was hard for the new parents to see their daughter undergoing such serious operations, but Debbi and David put their full trust in Pegoli and his medical team, which included Heather Goetzman, C.P.N.P., N.N.P., and Jennifer Maddison, P.N.P.
“Dr. Pegoli did such a good job of telling us what we needed to know. He told us it was his job to take care of the details,” David said.
Leah had to be rushed to URMC’s Pediatric Emergency Medicine Department on several occasions for dehydration, sores or infections. Regardless of whether it was a serious incident that brought her to the hospital or if Leah’s parents just had questions or concerns and were calling from home, Pegoli or someone from his team always got back to them right away with answers.
Leah was in and out of the post-surgical pediatric unit (4-3600) for eight months or so and Debbi and David developed strong relationships with the nursing staff and with other families on the unit – many of whom had been at the hospital longer and more frequently than Leah. The couple was welcomed back like family every time they returned to the unit with Leah.
“They were all just so wonderful,” Debbi said, tearfully. “The nurses put up with my hysterics. I was probably the worst behaved I had ever been in my life. You could tell they cared. They went out of their way to answer questions and someone was always there when we called.”
Debbi and David had some trouble finding a place that would care for Leah while they were at work, but they were referred to Tot Spot in Macedon. Leah’s complication occurs in only 1 in 5,000 babies, but Tot Spot already cared for two children with similar issues when Leah’s parents visited the center. Leah’s case was more severe, since she had both a colostomy and ileostomy. Staff members were willing to be trained to tend to Leah’s specific needs and Kathy Rideout, associate dean for Academic Affairs in the School of Nursing, was more than willing to conduct the training.
Leah was behind her developmental milestones when she arrived at the day care, but she quickly learned how to crawl and then to walk, and she picked up on English too. Although Leah’s “plumbing” issues were not completely fixed yet, she was “as happy as can be,” Debbi said, because she was no longer in pain. Leah made friends quickly and Debbi joked that she has a more active social life than her parents.
Pegoli performed a third surgical procedure in the beginning of 2010 to reconnect Leah’s proper tubes together and create a rectum for Leah. Her surgery, a sagittal anorectoplasty, went well, but little Leah had other plans.
Normally, these procedures are done before an infant can walk or stand, explained Pegoli. But 18-month-old Leah did not want to sit still like a newborn. The little girl fully enjoyed her newfound ability to move about comfortably and bounded around the hospital after the surgery, accidentally tearing her new opening. She was back in surgery several days later with Pegoli, to repair the damage and this time, Leah let herself heal.
Still, she needed another surgery in April 2010, to reverse the ileostomy and colostomy.
More than a year later, Debbi and David could not be happier. They chalk their success up to the support system they were so fortunate to have during their time of need.
“You think you can go about your job as normal when your child has multiple surgeries, but you just can’t,” David said.
Debbi Napolitano, Ph.D., and David McAdam, Ph.D., who work as assistant professors for Golisano Children’s Hospital’s Division of Neurodevelopmental and Behavioral Pediatrics, expressed their appreciation for their colleagues who offered to donate their vacation time to the couple, the resources they had to support them through the adoption process and in finding an appropriate day care center for Leah, the friends and family members who helped out when they could and the medical team at Golisano Children’s Hospital.
“Now Leah can be whatever she wants to be in life,” David proudly declared. The little miracle has come a long way – and thanks to two very compassionate parents and the medical expertise at Golisano Children’s Hospital, when it comes to Leah’s future, the sky is the limit.
Tune in to Children's Miracle Network's News 10NBC Telethon to meet Leah and her family, along with four other Miracle Kid families and Golisano Children's Hospital supporters and providers. The Telethon will take place during Miracle Weekend, 7 to 11 p.m. Friday, June 3, and 5 to 8 p.m. Saturday, June 4, on News10NBC. To make a gift, dial (585) 241-KIDS to donate during the Telethon or donate online.
The Stroll for Strong Kids fundraising walk will also take place during Miracle Weekend from 8 a.m. to 1 p.m. Saturday, June 4, at the University or Rochester’s Fauver Stadium. To sign up or learn more, visit www.bit.ly/Stroll2011.