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1 in 500 Trillion! Triplets Undergo First-Ever Operation To Fix Rare Skull Condition

Discussion in 'Pediatrics' started by Ghada Ali youssef, May 2, 2017.

  1. Ghada Ali youssef

    Ghada Ali youssef Golden Member

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    • Jackson, Hunter and Kaden Howard, of New York, were born in October with craniosynostosis
    • It means each of their skulls failed to fully develop, causing head deformity
    • Surgeons at Stony Brook removed a bone from each of their heads at 9 weeks
    • Six months later they are bubbly, happy boys and hitting all their milestones
    • It was a spontaneous natural pregnancy for first-time parents Amy and Michael Howard, 38 and 41 years old
    • Michael told Daily Mail Online: 'They are certainly a handful! But we wouldn't change it for the world'

    A set of triplets have undergone a first-ever operation to cure all three of them of a rare skull deformity.

    Jackson, Hunter and Kaden Howard were born in October 2016 with craniosynostosis, a condition that means parts of their skulls fused in the womb, and they were all born with misshapen heads.

    Ultimately, this condition can lead to vision loss and limited brain growth. Treatment can be risky unless it's caught early.

    And so, just nine weeks after their birth, the boys underwent simultaneous skull surgery at Stony Brook Children's Hospital in New York.

    Five months later, they are hitting key milestones, and they're just as lively and energetic as any six-month-olds - a handful but a relief for first-time parents Amy and Michael Howard.

    'I was nervous before the surgery for sure,' Amy, 38, from Center Moriches on Long Island, told Daily Mail Online on Monday. 'But now they're doing great. It's amazing.'

    Michael, 41, added: 'They are certainly a handful! But we wouldn't change it for the world.'

    The boys were diagnosed at one week old, after close monitoring in the NICU.

    Jackson and Hunter, who are identical, had sagittal synostosis. Kaden, who is fraternal, had metopic synostosis. Though the conditions are the same in effect and require the same surgery, they involve different bones in the skull.

    The chance of having triplets is one in 1,000.

    The chance of sagittal synostosis is one in 4,000.

    The chance of metopic synostosis is 1 in 10,000.

    'If you crunch all the numbers, the chance of having triplets with these conditions is one in 500 trillion,' the boys' surgeon Dr David Chesler told Daily Mail Online.

    Amy admits she had no idea the boys had a head deformity at first.

    It was their first pregnancy, and a completely spontaneous natural one at that. They didn't find out they were expecting three until their second obstetrician visit.

    So when she finally got to hold the boys at 9.37am on October 22 last year, she wasn't sure if their elongated heads and protruding foreheads was anything to worry about.

    'There's not much room in there, is there? I wasn't sure if, it being three of them, they were just squashed or something.'

    Michael agreed: 'I wasn't sure; I could kind of tell there was something up with Jackson and Kaden. Hunter I couldn't really tell. But we both just thought it was a normal kind of thing.'

    Dr Chesler said he could see what it was immediately - but was staggered.

    The chances of this happening are so rare. It has never been documented in medical literature, and nobody I've spoken to has ever seen this before.'

    Since each boy had such significant deformities, Dr Chesler decided to do one CT scan on each to help understand their needs ahead of surgery.

    'Very often I wouldn't do a CT scan because based on the shape of the head I can make a diagnosis. But in this case we decided it was best. One CT scan is not damaging for a baby; I wouldn't do more than that.'

    Finally, they were booked in for surgery in the first week of January, operating on each boy individually over the course of two days.

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    The surgery involved removing a bone from the skull. It releases the prematurely closed suture via two small incisions.

    The operation typically takes between 90 and 180 minutes and has an average hospital stay of one night.

    There is rarely a need for blood transfusions with endoscopic surgery, unlike open-skull, so the risk of blood loss and complications are dramatically lowered

    'I don't think it hit me until a few weeks after we found out they needed surgery,' Amy told Daily Mail Online.

    'I started to worry about brain damage - if their brains couldn't grow, what does that mean exactly? There isn't clear data on links between craniosynostosis and brain development.

    'But Dr Chesler told me it would be fine.'

    Now as part of the postoperative care, the three boys wear custom-fit helmets, 23 hours a day, seven days a week, to help guide and mold the shape of their skulls as they grow.

    They will wear these helmets for six months, then have check-ups twice a year until they are about six years old.

    Ninety-five percent of cases see completely normal head development after the surgery and recovery.

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