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A father’s love for his daughter coupled with the expertise of a trained medical transplant team miles away was all it took to provide a ray of hope for a Puerto Rican girl born with Crigler-Najjar syndrome.
Born in a remote town in Puerto Rico, little Naldyshka Vega Valedon began to experience signs of liver disease only five days after birth as her yellow skin indicated jaundice. When more than a year of phototherapy did not reduce the bilirubin levels, the doctors became concerned about her risk for kernicterus, an extreme case of jaundice that can lead to serious neurological complications.
Naldyshka was sent to San Juan where she was diagnosed with Crigler-Najjar syndrome, a rare condition that causes a toxic buildup of bilirubin in the liver. The specialists began discussing the need for more aggressive treatment with physicians from Children’s Hospital of Pittsburgh of UPMC who had visited the San Juan hospital in the past and were available to discuss Naldyshka’s case.
The doctors recommended Naldyshka be transferred to Pittsburgh to undergo a transplant to clean out the bilirubin and give her a chance to live without fear of future build up. Before a transplant could take place, a donor needed to be found. Luckily, the little girl did not have to look any further than her own family as her father, Arnaldo, was a perfect match for a living donor transplant.
“Naldyshka’s condition was getting worse; we didn’t know how long she would have to wait to find a donor,” says Arnaldo. “I never even thought twice about it. My fathering instinct told me to do it.”
Arnaldo and his wife, Anais, began working closely with the International Services team at Children’s to arrange transport and admission for both daughter and father in Pittsburgh. Eventually, the family traveled to Pittsburgh for tests, educational sessions, and preparation by the staff for the procedures.
One month after arrival, Arnaldo was admitted to UPMC Montefiore while Naldyshka was prepped for surgery at Children’s Hospital. Anais nervously waited at Children’s for news on both family members.
“I was very worried because my husband was by himself and my daughter was here. It was not possible for me to be with him,” notes Anais.
Children’s International Services team tried to calm her nerves by visiting and interpreting for her as she waited for news. Eight hours later, she learned her husband was out of surgery; Naldyshka followed six hours later.
“The transplant went very well,” recalls Rakesh Sindhi, MD, co-director of the Pediatric Transplant program. “The family, despite their youth, had a remarkable level of maturity. They understood well what was happening throughout the transplant.”
Post-transplant brought some medical challenges for Naldyshka, including treatment for a viral infection from the immune suppressants. But she was quickly on her way to a full, healthy recovery. After one month, she was discharged from the hospital and began regular visits to the follow-up clinic at Children’s where the physicians continually checked for complications. Within three months, Naldyshka showed few signs of her life-threatening disease.
Today, the little girl with the big brown eyes and curly hair flashes a contagious grin as she happily plays and prances about. Her parents speak of their relief after the transplant and the caring work of the International Services team at Children’s.
“The care we received here was really good,” says Anais. “They give priority to the kids.” The family is going to stay in the United States and move near relatives in eastern Pennsylvania to begin a new life.
“We expect Naldyshka to keep living for as long as God intends,” Dr. Sindhi reflects. “She should have a normal life span and we expect her to do very well long term.”
To seek a consultation or refer a patient to Children’s Hospital of Pittsburgh of UPMC, contact our International Services team by phone at +1-412-692-3000 or by e-mail at firstname.lastname@example.org.
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