Dane Conrads was in excellent health when he was born, almost five weeks early, in April 2014 at hospital in San Francisco. But after a routine circumcision, Dane started bleeding and it wouldn’t stop.
For Dane’s parents, A.J. and Ted Conrads, it was an unexpected shock. “A blood test showed that his liver enzymes were through the roof, which was a sign that his liver was failing,” recalls A.J.
An ambulance rushed Dane to Lucile Packard Children’s Hospital Stanford. “It was all hands on deck,” says A.J. “He was dying quickly from bleeding internally.”
Janene Fuerch, MD, clinical assistant professor of neonatology, was one of the neonatal intensive care unit (NICU) fellows during Dane’s first several weeks at Packard Children’s. “He was in fulminant liver failure, and we knew he was most likely going to die. Neonates in severe liver failure often don’t survive,” she explains.
Dane’s doctors stabilized him with several daily blood transfusions and continuous support. Over the next 10 days, rounds of testing revealed that Dane had enterovirus, a relative of the polio virus.
“He was really a desperately ill little guy,” says William Benitz, MD, professor of neonatology and Dane’s attending physician in the NICU. “He demonstrated how sick a vulnerable baby can get from what would be a routine, ho-hum, everyday virus for most of us.”
In a premature baby like Dane, enterovirus can cause liver failure, which can lead to brain damage and heart failure. With its wide range of potential symptoms, enterovirus has no available medical cure, so Dane’s own immune system would have to fight off the disease.
The next six weeks were a harrowing, daily effort to keep Dane alive and help him grow healthy enough — and large enough — to receive a liver transplant. “We knew this was a stretch. He would be the smallest transplant the team had ever done,” says Dr. Fuerch. “But he wasn’t giving up, so we weren’t going to either.”
Even as his care team worked to stabilize his blood levels every day, Dane’s failing liver was not doing its job of clearing his blood of protein byproducts like ammonia. This meant he needed continuous hemodialysis, which would circulate his blood to clean it externally and return it to his body. “We had to balance the risks of bleeding, clotting, and infection and work to optimize his nutrition,” says Cynthia Wong, MD, medical director of chronic dialysis. “With his multiorgan failure, this was the only option to save his life.”
“When the interventional radiologist put in a dialysis catheter, it was a tremendous moment of success,” says Waldo Concepcion, MD, chief of pediatric kidney transplantation. “Being able to dialyze him so the medical team could stabilize him was very, very critical to his survival.”
In the early hours of May 23, 2014, six-week-old Dane, weighing just under five pounds, received his new liver from a surgical team led by Carlos Esquivel, MD, PhD, chief of the division of transplantation, and Dr. Concepcion.
About six weeks after Dane’s surgery and his slow, rocky recovery, A.J. and Ted were finally able to pick him up and hold him for the first time since his birth. But soon after his new liver stabilized, Dane’s kidneys failed. Dane now needed peritoneal dialysis to do the work of his kidneys.
On October 8, after six months in the hospital, A.J. and Ted were able to take Dane home, where he would need 11 hours of peritoneal dialysis each day until he could receive a kidney transplant.
A.J. had hoped to be a living kidney donor for Dane. But Dane needed a perfectly sized kidney, which could only come from a deceased donor. “The odds were stacked against Dane both in terms of the complexity of the anticipated surgery and the scarcity of potential donor kidneys,” says Ted.
On April 7, 2017, one day before Dane’s third birthday, Dr. Concepcion and Amy Gallo, MD, assistant professor of abdominal transplantation surgery, performed Dane’s pioneering kidney transplant.
“He was tiny, but we modified and tailored his own kidney vein to be able to drain the new kidney,” says Dr. Concepcion. “It was a completely innovative process of doing the kidney transplant using only what the patient had available, which was that one vein.”
Within 24 hours of his kidney transplant, Dane showed signs of dramatic improvement. He was discharged after 10 days.
Today, Dane loves playing with his little brother, Carter. “He’s just really happy now. He’s super social and loves his toys and going to music class,” says A.J. “Finally, after three years, we’re feeling relaxed — like, OK, he’s going to be OK.”
Authors
- Julie Greicius
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All that Lucile Packard does for our children is nothing but a miracle. 3 years ago we were going through the same situation my son was literally bleeding insinde him they had to infuse 7 units of blood basically all of his blood volume. I could probably say if it wasn’t for Lucile and the staff and not forgetting the blood donors our precious Angelo would not be here with us. So for that cudos to every team members. If you can let’s become blood donor to save another baby just like they saved ours.