Infant with rare genetic disorder gets 8-organ transplant 5 years after sister receives 7

Written by admin on 16/11/2018 Categories: 老域名购买

A one-year-old boy in Miami is recovering in hospital after a whopping eight-organ transplant this past February.

Incredibly, it wasn’t the first time this family had confronted such a surgery: five years ago their daughter underwent a seven-organ transplant stemming from the same genetic disorder.

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    “It didn’t make it any easier to have to do it twice,” their mother, Julissa Cerda, told the Olympian from her son Liam’s hospital room at Jackson Memorial Hospital in Miami.

    “As a parent, it’s very hard. But I stay strong for both of them. They’re the ones going through it. I’m just the support system.”

    Both Liam and his older sister, Delilah, suffer from megacystis microcolon intestinal hypoperistalsis syndrome (MMIHS), or Berdon syndrome. According to the Genetic and Rare Diseases Information Center (GARD) in Maryland, the congenital defect causes the organs to form improperly early in life.

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    This can cause abdominal distension as a result of various factors such as a dilated urinary bladder, a small colon, and a failing intestinal system.

    “The nerves to their gastrointestinal tracts, the small bowel and large bowel, are not functional…the intestine and bladder don’t contract so they can’t eat,” pediatric gastroenterologist Dr. Jennifer Garcia told CBS News in Miami.

    This disorder affects an estimated one in one million children, and is normally fatal within the first year of a child’s life.

    Such were the odds facing Cerda in 2011 when her then-16-month-old daughter Delilah faced a daunting seven-organ transplant involving her liver, pancreas, stomach, large intestine, small intestine, kidney and spleen.

    “When [Delilah] was born they gave her 24 hours to live,” Cerda said during a press conference at Jackson Memorial in 2011 shortly after the successful surgery.

    “They basically told us she was going to die because she couldn’t eat. I look at these doctors [today] as angels.”

    So you can imagine her pain some five years later when an ultrasound on her then-six-week-old son Liam revealed he had an enlarged bladder.

    “As a mom, it was very hard to hear that my next newborn was going to have the same syndrome that my six-year-old now had,” Cerda told CBS News.

    Cerda insisted the child be treated at Jackson Memorial, the same hospital which had saved her daughter’s life in 2011.

    “I immediately knew that Liam’s only change at survival would be at Jackson,” Cerda told CBS News.

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    “When my daughter Delilah was diagnosed, I did my research and I knew that Jackson was one of the few hospitals in the country that also performed stomach transplants.”

    Eventually, Liam would require an eight-organ transplant during which his liver, stomach, large intestine, small intestine, pancreas, two kidneys and bladder were all replaced. The surgery took over nine hours.

    “We have to remove all the organs from the baby at the same time. For a certain period of time they are only left with heart and be lungs,” Dr. Rodrigo Vianna, a liver and gastrointestinal transplant surgeon at Jackson Memorial, told CBS News.

    From the time he was born, Liam has relied on a feeding tube to survive. Yet today, several weeks removed from his monumental surgery, he’s already eating solid foods.

    “It’s like feeding a newborn,” Cerda told the Olympian. “We’re teaching him how to eat, but he’s doing amazingly well.”

    While the siblings will require constant medical care for the rest of their lives, they stand as living proof of success in the face of medical odds according to the doctor who treated them.

    “Multi-organ transplants are very rare,” Dr. Rodrigo Vianna said. “In the entire country, to have two success children in the same family sitting here, it’s a great thing.”

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