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!