Lynlee Hope Boemer is a unique child – she holds the distinction of having been born twice. Her mother, Texas native Margaret, went for a routine ultrasound scan at 16 weeks only to hear the last news anyone wants to hear – her baby was very sick. Lynlee Hope had a tumor known as a sacrococcygeal teratoma, that affects one in every 35,000 infants. Boemer had already been through one tragedy in the course of her pregnancy – Lynlee had initially been a twin but the other baby had been lost.
It was a shock at 16 weeks to learn of her daughter's rare birth defect.
Sacrococcygeal teratoma is a tumor that develops before birth and grows from a baby's coccyx, the tailbone.
"This is the most common tumor we see in a newborn," said Dr. Darrell Cass, co-director of Texas Children's Fetal Center and associate professor of surgery, pediatrics and obstetrics and gynecology at Baylor College Medicine according to CNN's News. "Even though it's the most common we see, it's still pretty rare."
"Some of these tumors can be very well-tolerated, so the fetus has it and can get born with it and we can take it out after the baby's born," said Cass. "But about half of the time, they cause problems for the fetus and it's usually causing problems because of a blood flow problem."
Cass explained that the tumor is trying to grow by sucking blood flow from the baby, yet the baby is also trying to grow, too "so it becomes a competition."
"LynLee didn't have much of a chance," Boemer said. "At 23 weeks, the tumor was shutting her heart down and causing her to go into cardiac failure, so it was a choice of allowing the tumor to take over her body or giving her a chance at life."
She was 23 weeks and 5 days pregnant, when Cass performed the emergency fetal surgery. By this time, the tumor was almost larger than the fetus.
Cass and Dr. Oluyinka Olutoye, his partner surgeon, operated for about five hours. "We don't want the mom's health to be jeopardized," said Cass, who explained they work carefully, both making the incision and sewing it up in order "to make that uterus be as sealed and as water tight as possible."
The surgical team removed the bulk of the tumor. When they finished their operation, the surgeons placed LynLee back inside the womb and sewed her mother's uterus shut.
Dr. Darrell Cass and Dr. Oluyinka Olutoye spent 5 hours in the operating room. "It's kind of a miracle you're able to open the uterus like that and seal it all back and the whole thing works," said Cass.
Boemer was on bed rest for the remainder of her pregnancy. Despite her pain, she marshaled her strength and made it another 12 weeks to nearly 36 weeks -- full term -- when Lynlee Hope was born for the second time via C-section on June 6.
The little fighter, named after both her grandmothers, weighed 5 pounds and 5 ounces.
Immediately, the hospital staff whisked the newborn away to the neonatal intensive care unit for an evaluation, but after this initial checkup, she was deemed healthy and transferred to the nursery. There was a risk the fetus could be born immediately after the in utero surgery, or die.