Margaret Boemer first sensed something was wrong when her ultrasound technician stayed unusually quiet during a routine 16-week prenatal checkup.
Soon, doctors would approach Boemer with more grim news: The child she was carrying had sacrococcygeal teratoma, a rare tumor that appeared at the base of baby's tailbone. It is estimated these types of tumors occur in about one of 40,000 pregnancies. If left unchecked, the tumor could continue taking her baby's blood supply and eventually cause heart failure.
Boemer and her husband were crushed. Only two weeks ago, they had learned the baby would be a girl, and were excited about the possibility of naming her Lynlee, after both of her grandmothers.
Now doctors were advising the couple from Lewisville, Tex., about 25 miles northwest of Dallas, to visit two more specialized hospitals in Houston for additional opinions.
"[My prenatal doctor] was very concerned about it because of the size of the tumor being that early along,” said Boemer, 38. “She felt like that there was a strong possibility that Lynlee would not make it to term.”
In Houston, one hospital “strongly recommended” the Boemers terminate the pregnancy. Performing open fetal surgery — essentially removing the baby before term in order to operate on the fetus — was too risky, doctors there said. But without such a surgery, Lynlee would likely die.
Meanwhile, doctors at Texas Children's Hospital examined the tumor with cautious optimism. They agreed that in utero surgery would be required, but as it happened, two doctors there, Darrell Cass and Oluyinka Olutoye, had successfully done such a procedure seven years before.
They explained to Boemer that it would indeed be extremely risky. But at 20 weeks into the pregnancy, the tumor was already almost as big as the fetus — and about four times larger than what would be considered the threshold for surgical intervention, Olutoye said.
"[The tumor] was putting such strain on Lynlee’s heart,” Boemer said. According to Cass and Olutoye, “it wasn’t really a matter of if I needed in utero surgery. It was kind of a matter of when. The goal was to get me to 24 weeks.”
Boemer returned to her Dallas-area home and waited. Day by day, the tumor increased in size, until it appeared that Lynlee was sitting on a large balloon inside the womb. Unlike Boemer's first two pregnancies, she hardly felt Lynlee kicking or moving inside her, and she knew it was because the tumor was encroaching on her daughter's space.
At 23 weeks, the tumor had grown large enough that doctors sent Boemer back to Texas Children's Hospital in Houston.
“I went down there thinking: 'I’ll be here for checkups all week,' " Boemer said. Instead, doctors told her Lynlee might not survive two more days without intervention. “I went into surgery that night.”
Before the procedure, Boemer and her husband met in a boardroom with more than a dozen doctors. They outlined the options, risks and possible outcomes of the surgery.
Boemer was 23 weeks and 5 days into her pregnancy — if the surgery failed and Lynlee needed to be delivered, the baby would be just on the edge of viability, doctors said.
They handed the Boemers a form.
“If she’s born, do you want us to do resuscitate if needed?” Boemer remembers them asking. “If she’s not doing well, do you want us to allow her to pass?”
Boemer had been doing okay up until that point, but it was then that she burst into tears.
“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.”
It took Cass, Olutoye and a team of about 20 others to perform the surgery itself. The majority of the time was spent making meticulous incisions into the uterus, then carefully pulling out the lower half of Lynlee's body.
In the middle of the procedure, Lynlee's heart stopped and needed to be restarted; she required a blood transfusion, as well.
“These are babies that are essentially dying,” Olutoye said. “You have a child who's already sick, and the operation itself can make her sicker.”
After removing about 90 percent of the tumor, surgeons placed Lynlee back into the womb. Closing the uterus proved tricky, as well. The doctors needed to seal the membrane to the uterus, doing it in a watertight fashion that — even after 23 weeks — would continue stretching as the pregnancy progressed.
After about five hours, the surgery was complete.
“And then the real work really starts,” Olutoye said, referring to the challenge of carrying the baby to term with a now-increased risk of the uterus rupturing.
Boemer was ordered to stay in Houston, on bed rest, for the remainder of her pregnancy. To doctors' relief and surprise, Lynlee continued to grow.
“Her heart got much better, now that it didn't have to work as hard pumping through this huge tumor,” Olutoye noted.
On June 6 — nearly 36 weeks into her pregnancy — Boemer underwent a C-section. The newborn infant who emerged “singing,” weighing 5 pounds and 5 ounces, was nothing like the “small, little gelatinous baby” Olutoye had operated on weeks earlier, he said.
“Watching Lynlee come out crying and kicking ... was really very exciting to see,” he said. “Her whole leg [during the surgery] was barely the size of my finger. They grow so much over such a short period of time.”
“You can say she's seen the world twice,” he added.
Filling out her birth certificate, the Boemers officially gave Lynlee her middle name: Hope.
At eight days old, Lynlee underwent another surgery to remove the rest of the tumor from her tailbone. She may require an operation in the future to reconstruct some pelvic muscles but is otherwise recovering well.
Lynlee will need to continue to return to Texas Children's Hospital for regular checkups. “We're going to get very close,” Olutoye tells all his patients, whom he says he often knows from “before they are born ... all the way up into adulthood.”
The baby is nearing her five-month birthday and “hitting all her milestones,” Boemer said. She giggles easily and enjoys being near her older sisters, she said.
“It’s been kind of overwhelming, how much attention her story’s gotten, but we’re very thankful,” Boemer said. “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. So I’m glad that it's getting attention so that others who are diagnosed can know that they’re not alone.”