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  • Baby Jackson was diagnosed with spina bifida and doctors recommended a terrifying surgery.

    Baby Jackson born twice
    Joni Reinkemeyer

    According to Mayo Clinic, spina bifida is a birth defect that occurs when the spine and spinal cord don't develop as expected and the gap left between the two can cause paralysis. After meeting with a doctor at Barnes Jewish Hospital in St. Louis, Missouri, the parents were offered a terrifying but possibly incredible option: to operate on their baby's spine -- before he was born.

    "When finding out our son had the worst form of spina bifida, we were in shock, upset, and very scared," Reinkemeyer tells CafeMom. "We had no idea what kind of life this would bring about for our child."  

    In addition to hopefully preventing Jackson's lesion from getting worse, which would give him a better chance of learning to walk, Reinkemeyer explains that the surgery also gave doctor's a the opportunity to reverse his Chairi II malformation. This condition occurs when brain tissue extends into the spinal cord and having this fixed before birth would reduce his need for a shunt by 50 percent. 

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  • Partially delivering a baby for an operation and then putting him back in the womb was something that hadn't been done at this hospital before.

    Baby Jackson born twice
    Joni Reinkemeyer

    According to Reinkemeyer, the proposed plan was to open her up, bring her baby's spine out of the womb, fix the hole, and then put him back so he could continue to develop. Although risky and the first time at this particular hospital, her doctor had performed similar operations elsewhere. 

    "We decided we wanted to go through the evaluations and find out if we were candidates and we decided to go through with the surgery even with the risks because we knew it could potentially give our son a better outcome and quality of life," she says. "The head fetal surgeon had done it at other hospitals and made me feel comfortable that the whole team was confident in performing the surgery." 

  • A month after first finding out about their baby's condition, Reinkemeyer went ahead with the surgery.

    Baby Jackson born twice
    Joni Reinkemeyer

    Jackson weighed just about a pound when he made his first entrance into the world at 25 weeks. "They cut open my uterus and exposed my baby's back and butt where the defect is to perform the surgery," she says. "After the neurosurgeons were done, they placed him back into my uterus and then the fetal surgeon closed me all up."     

    The operation was originally scheduled to take up to six hours but because everything went better than expected, doctors were finished within four. 

  • After that, Reinkemeyer spent ten weeks on strict bedrest before Jackson was born again.

    Baby Jackson born twice
    Joni Reinkemeyer

    The first surgery was incredibly painful for Reinkemeyer to recover from and she spent seven days in the hospital because she started experiencing contractions.

    But it was completely worth it because it was a success. The goal was to make it to 37 weeks but because, Reinkemeyer had lost amniotic fluid, she gave birth early. At 35 weeks weeks, Jackson was born weighing 4 pounds 9 ounces. "I officially met Jackson for the first time ten hours after I had him," she says. "It was a moment I can't explain; I cried tears of happiness and I was so in love. He was absolutely perfect!  


  • "If we had known how perfect he was going to be regardless the disability we wouldn't have been so scared," she says.

    Baby Jackson born twice
    Joni Reinkemeyer

    Despite the initial fear, Reinkemeyer is incredibly grateful that her baby was able to enter the world but still safely return to her womb. "This is where the 'twice born' comes into play. They say these babies have a 'butt day,' as part of them entered the world for a little bit!" she says. "People think it's cool and that it deserves to be celebrated for everything he had to go through -- he will definitely get two cakes!"

  • After 12 days in the neonatal intensive care unit, Jackson was brought home on New Year's Day.

    Baby Jackson born twice
    Joni Reinkemeyer

    "His prognosis is that he still has spina bifida and always will, but he is doing great and meeting all his milestones," she says. "No intervention with bowel and bladder right now, we are correcting his clubfeet, and he is also missing a large part of his corpus callosum but it's not affecting him right now at all."