For months, Peyton Smith’s nightly prayer was for his younger brother to receive new organs.
As fate would have it, Petyon’s answered prayers became the best birthday wish ever on Jan. 31 — the date his younger brother received the first-ever dual kidney-liver transplant at Monroe Carell Jr. Children’s Hospital at Vanderbilt.
“It was an absolutely amazing day,” said Stephanie Smith, Noah’s mom. “We celebrated the gift of life for both of our kids on that day!”
Noah’s case marks a milestone for the pediatric transplant program and further highlights the culture of collaboration and innovation at Children’s Hospital.
“It has been incredibly rewarding to witness Noah’s transformation after transplant,” said Anita Pai, MD, assistant professor of Clinical Pediatric Gastroenterology at Children’s Hospital.
“He has made huge developmental strides in just a few months. He is more curious, more energetic and more playful than ever before,” said Pai, one of Noah’s transplant hepatologists.
Noah’s medical journey began during Stephanie’s 26th week of pregnancy when an ultrasound detected enlarged kidneys. Further tests led to a diagnosis of Autosomal Recessive Polycystic Kidney Disease (ARPKD), a rare genetic disorder characterized by fluid-filled kidney cysts.
Affecting 1 in 20,000 children, the disorder often impacts the lungs. About 30% of newborns born with ARPKD die within the first week of life.
Noah was born at 35 weeks gestation via C-section.
Within weeks after his birth, he underwent a double nephrectomy and began dialysis. One caveat — the removal of both of his kidneys allowed his lungs to expand.
“He was able to breath on his own and that was a huge miracle,” said Smith.
After 77 days, he was discharged home to continue the 12-hour nighttime dialysis regime and to work on gaining weight to become eligible for transplant.
During routine monitoring for a liver-related complication of ARPKD, the family was dealt another blow. Imaging showed a liver mass, followed by a biopsy which revealed hepatoblastoma, liver cancer.
Noah completed one round of chemotherapy and was listed for a dual organ transplant. Three days later, the nearly 12-hour, dual organ transplant was performed.
“It seemed to be one thing after the next,” said Smith. “We said, ‘OK, God, you didn’t bring us this far to bring us this far.’ We had to trust God, and we handed our baby over to this team. It’s been such a roller coaster, but we are now on a smoother path.”
That path now involves clearing the way for a very busy crawler.
“He started crawling a month after he got his organs,” exclaimed Smith. “He is everywhere. He even laughs differently. You can tell that this is the first time that he has felt well. He plays with Peyton, something they were not able to do before the transplant with so little energy. It will take some time, but he will catch up.”
Prior to the transplant, Stephanie and her husband, Daniel, took turns holding Noah, spending time with Peyton and getting sleep when possible.
“So much has changed, and we are really looking forward to spending quality time as a family,” gushed Smith. “Everything about Noah’s situation has been terrifying, but now with this gift … he is a completely different kid.”
The multidisciplinary team overseeing Noah’s case, which included cancer treatment, pre-operative, transplantation and post-operative and long-term care, created an individualized treatment plan to ensure the best care possible.
“Our goal is to continue to meet the needs of children, especially those with complex medical needs, by providing them the best chance of a normal life through transplantation,” said Sophoclis Alexopoulos, MD, director of Pediatric Liver Transplantation.