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On June 6th, 2016, Margaret Boemer and her husband were over the moon as they welcomed
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the birth of their third child. The 5 pound 5 ounce baby girl arrived kicking and screaming,
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much to her parent's delight and relief. Her birth was particularly special because
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it was actually the second time that baby Lynlee had been born.
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“You can say she's seen the world twice,” said her doctor. Birth is supposed to be
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a once-in-a-lifetime experience, so how are some babies born twice?
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The Boemers were already the proud parents of 2 little girls when they found out they were
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once again pregnant with their third child. After having suffered a miscarriage a few months before,
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the expectant parents were delighted to learn that Margaret was carrying twins,
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but once again, tragedy struck when they lost one of the babies at 6 weeks.
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The Boemers were crushed, but tried their best to stay positive and focus on the baby that
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had survived, but their optimism was about to be tested yet again, in a truly shocking way.
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When Margaret was 14 weeks pregnant, and ultrasound revealed the Boemers were expecting yet
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another girl, and they even picked out a name for her - they decided to call her Lynlee,
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after both of her grandmothers. But, just 2 weeks later at her 16 week ultrasound,
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Margaret knew something was wrong. She first became suspicious when the ultrasound
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technician was unusually quiet during the exam. Margaret was prepared for the worst,
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but the news that she would soon get from the doctors would turn the Boemers' world upside down.
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Margarets doctors diagnosed baby Lynlee with sacrococcygeal teratoma,
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and explained that a large tumor was growing at the base of their baby's tailbone.
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The incredibly rare condition affects just 1 in 40,000 pregnancies, and it can be life-threatening
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if left unchecked. As the tumor grows, it steals blood supply from the fetus and puts pressure
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on the growing baby's heart, and eventually can cause heart failure in the unborn baby.
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The Boemers were devastated. After everything that they had been through already, it seemed
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unimaginable that their longed-for baby was facing a life or death crisis before she was even born.
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The tumor was already so large that their prenatal doctor was worried that little Lynlee
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wouldn't make it to full term, so the Boemers, who lived in the small town of Lewisville,
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Texas about 25 miles from Dallas, were immediately sent to Houston to consult with specialists.
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The first hospital they went to told them there was nothing that could be done.
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They said that Lynlee would die before making it to term, and they strongly recommended that
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the Boemers terminate the pregnancy. Unable to accept that grim diagnosis,
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the Boemers next turned to Texas Children's Hospital, where they were relieved to find
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that the doctors there were cautiously optimistic that something could be done to save baby Lynlee.
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It wouldn't be an easy road by any means, and there were certainly no guarantees,
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but 2 doctors at Texas Children's Hospital had successfully operated on a baby in utero 7 years
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prior, and they were willing to try the extremely risky surgery again to try and save Lynlee.
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Now 20 weeks along, the tumor was already almost as big as Lynlee herself and was growing every
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day - in the ultrasound, it looked like the baby was sitting on top of a large balloon.
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Although the tumor was already nearly 4 times larger than the usual threshold at which doctors
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would operate and was putting an incredible strain on little Lynlee's heart, Drs. Darrel
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Cass and Oluyinka Olutoye hoped to hold off on the surgery until Margaret was 24 weeks along. This
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would give Lynlee a better chance of surviving if she needed to be delivered early, so the Boemers
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were sent home to Dallas to wait and hope. Unlike with her first 2 pregnancies, Margaret couldn't
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feel Lynnlee kicking or moving, and she knew that her baby was running out of space - and time.
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By 23 weeks along, the tumor had gotten so big that Margaret's doctors in Dallas sent her back
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to Texas Children's Hospital. The Boemers expected to be there for a week of testing, but to their
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dismay the doctors there told them that Lynlee wouldn't survive another 2 days without surgery.
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If the surgery failed and Lynlee needed to be delivered, she would be considered an
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“extremely preterm baby”, and she would be on the very edge of survival for a premie.
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Before the surgery could start, the Boemers had to meet with dozens of doctors in a hospital
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boardroom to make sure that they understood the risks of the surgery and were clear about
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all of their options. The anxious parents were asked to make decisions about what doctors would
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do under certain circumstances, like whether baby Lynlee should be resuscitated if her
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heart stopped during surgery, and they had to sign mountains of paperwork acknowledging the
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risks of the surgery. “These are babies that are essentially dying,” Dr. Olutoye said.
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“You have a child who's already sick, and the operation itself can make her sicker.”
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Margaret had managed to hold it together so far throughout this strange and terrifying ordeal,
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but at this point she finally broke down. “To think we had come so far,
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to try to save her,” she said. “I was very nervous and scared. ... but
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my husband and I were focused on whatever we needed to do to try to save our baby.”
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Finally, after weeks of anxiously waiting and hours of heartbreaking meetings,
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Margaret and Lynlee went into surgery that very same night, at 23 weeks and 5 days along. Drs.
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Cass and Olutoye were assisted by a team of about 20 other medical professionals for
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the complicated and extremely risky surgery. To begin, the surgeons delicately made a meticulous
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incision through Margaret's abdomen and into her uterus. Then, they carefully pulled the lower
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half of Lynlee's body out of the womb to get access to the tumor at the base of her spine.
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This would be the first - but hopefully not the last - time that Lynnlee would be “born”.
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As the doctor's worked carefully to remove Lynlee's tumor, suddenly the room was filled
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with the sounds of beeping alarms - Lynlee's heart had stopped beating mid-procedure. Doctors
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and nurses rushed to resuscitate the tiny baby and thankfully, her heart started beating again.
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After a blood transfusion to replace the blood she had lost as the tumor was removed,
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the doctors were able to resume the operation, and after 5 hours of gruelling work,
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they had removed 90% of the tumor and returned tiny Lynlee to the safety of her mother's womb.
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Closing the incision was actually one of the trickiest parts of the
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whole operation - the doctors had to seal the membrane of Margaret's uterus in such a way
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that it would be both watertight and be able to continue to stretch as the pregnancy progressed
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and Lynlee grew over the coming weeks. Now the real work would begin - ensuring that
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Margaret could carry Lynlee to term without complications. Because of the incision the
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doctors had made in her uterus, Margaret was at an increased risk of uterine rupture,
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so she was ordered to remain in Houston on strict bed rest for the remainder of her pregnancy.
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To the Boemers' and their doctors' surprise and relief, Lynlee continued to grow and her heart
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grew stronger now that it didn't have to work so hard to pump blood through the huge tumor.
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Finally, on June 6th, 2016, having reached full term at 36 weeks along,
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doctors delivered Lynlee - for the second time - by c-section. To everyone's delight,
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Lynlee came out kicking and screaming, weighing a respectable 5 pounds 5 ounces.
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Dr. Olutoye remarked that she looked nothing like the “small, little gelatinous baby”
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that he had operated on just a few weeks earlier. During the surgery Lynlee's whole leg was the size
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of the doctor's finger, and it was incredible to see how much she had grown in such a short time.
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After her miraculous 2nd birth, Lynlee was given her highly appropriate middle
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name - Hope. At 8 days old she underwent another surgery to remove the rest of her tumor,
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and although she may require more surgeries in the future to reconstruct some of her pelvic muscles,
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her recovery has been remarkably smooth. By 5 months old, little Lynlee Hope was hitting all
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of her milestones and had become a smiley, giggly baby who loved spending time with her big sisters.
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She would continue to go back to Texas Children's Hospital for checkups with her surgeons.
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“We're going to get very close,” Dr. Olutoye says, considering he usually knows his patients
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from “before they are born ... all the way up into adulthood.” Still, Lynlee is a special
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case for him. “You can say she's seen the world twice,” says the doctor of his miracle patient.
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Lynlee's rare birth - er, births - garnered a lot of media attention,
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and her family found themselves on the cover of newspapers and appearing on TV
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stations all over the world. While her parents were a bit overwhelmed by all the attention,
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they also say that they are actually thankful that their story is getting out there.
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“I can tell you when we were told this very long name, we were scared and didn't know
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what that was and had never heard of it,” said Margaret. “So I'm glad that
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it's getting attention so that others who are diagnosed can know that they're not alone.”
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While Lynlee's story may seem incredibly unique, Margaret is right when she says that
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they are not alone. Believe it or not, there are actually other cases of babies being born twice.
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These types of in-utero surgeries have only been done a few hundred times worldwide,
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so it's still incredibly rare, and only about 1 in 5 babies referred
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to doctors for pre-birth surgery are actually eligible for the procedure.
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Jackson Reinkemeyer is another one of these miracle babies who was born twice. In 2017,
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Joni Reinkemeyer went in for her 19 week ultrasound hoping to find out her baby's
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gender. She was told that she was expecting a son, but she also got some terrible news - her son,
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Jackson was diagnosed with spina bifida, a condition where the spine doesn't develop
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properly, leading to gaps in the spinal column. The best hope for Jackson to have
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a somewhat easier life was for doctors to operate on him before he was born,
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so at the end of her 2nd trimester, a team of 32 doctors and medical professionals completed the
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hospital's first in utero surgery, and Jackson was born for the first time. 10 weeks later, he was
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born again via c-section. Jackson's mom, Joni, is grateful that her son survived his surgery,
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and she marks the occasion in a pretty special way - with 2 birthday celebrations.
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“Seeing that he was born twice,” she says, “I think we can allow him two cakes.”
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Spina bifida is one of the most common reasons that doctors may need to operate
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on a baby before it's born. In 2018, Bethan Simpson became only the 4th mother in the
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U.K. to have in-utero surgery at 20 weeks along to correct her son's spina bifida,
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and she found comfort in Joni and Jackson's story as she prepared for her baby's procedure.
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Though still exceedingly rare, in utero surgeries are becoming more common.
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There is even a TV series about it on PBS called Twice Born. The series focuses on The Children's
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Hospital of Philadelphia's, which has a dedicated Special Delivery Unit that exclusively does rare
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surgeries on babies still in the womb. Episodes gave viewers a rare look into the unique unit,
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and showcased some incredibly rare and extremely dangerous in-utero surgeries
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that aimed to correct everything from a tumor in the mouth of a baby girl,
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to a potentially fatal urinary tract obstruction, to even a rare case of twin-twin transfusion
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syndrome, where two babies share unequal amounts of the placenta's blood supply,
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causing one baby to grow at a faster rate than the other.
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In-utero surgery is still incredibly rare, but as surgical techniques continue to improve,
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we just might see more babies like little Lynlee who are born twice!
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If you thought learning about babies who are born twice was cool,
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you'll definitely want to check out our other videos, like this one called
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“What Happens When You Are Born”. Or, you might find this other video interesting.
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As always, thanks for watching, and don't forget to like, share and subscribe!
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See you next time!