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