Four months after Lynlee Hope entered the world for a second time, the medical miracle is hitting growth milestones and working on strengthening her muscles. Lynlee made her debut at 23 weeks gestation, when doctors removed her from her mother’s uterus to operate on a life-threatening tumor that was putting strain on her fetal heart. After the procedure, they put Lynlee back into her mother's womb, where she would continue to develop for 13 more weeks.
Her mother, Margaret Boemer, was pregnant with twins and in the care of a specialist when she miscarried Lynlee's sibling. It never occurred to her that something may happen to Lynlee, so she and her husband, Jeff, were shocked when they received a diagnosis of Sacrococcygeal Teratoma (SCT) at a 16-week ultrasound. SCT is a rare birth defect that occurs in one out of 40,000 pregnancies, and causes a tumor to grow from the tailbone area which threatens the baby’s blood supply and puts significant strain on the fetal heart.
In Lynlee’s case, the tumor was growing rapidly and causing heart failure. Doctors near the Boemer’s Lewisville, Texas, home told the couple to terminate the pregnancy and start over, but that wasn’t an option for Boemer, who also has a 19-year-old stepson and two daughters ages 9 and 2.
"One hospital strongly recommended termination and talked to me about if I were to continue [with the pregnancy] that most likely she wouldn't make it, and that I was putting my health at risk, so it would probably be better to terminate and start over, which we immediately knew we didn't want to do," Boemer, 38, told FoxNews.com.
Through research, Boemer discovered Texas Children’s Hospital had successfully cared for a baby with SCT, and scheduled an appointment for a consultation. Boemer was placed under the care of Dr. Oluyinka Olutoye and Dr. Darrell Cass, who together developed the Texas Children’s Fetal Center. They suggested open fetal surgery, which Boemer and her husband felt would give their daughter the best chance at life despite surgical risks posed to the fetus and mother.
“At 23 weeks my specialist [at home] noticed how large [the tumor] was getting, and it seemed to be putting a lot of strain on Lynlee’s heart,” Boemer told FoxNews.com.
Subsequent ultrasounds and fetal echocardiograms at Texas Children’s determined Lynlee was going into heart failure and the surgery would have to occur immediately. Fourteen doctors and specialists informed the couple of the procedure's risks, including that the surgery could cause Boemer’s uterus to rupture, develop blood clots or bleed out. They also had to decide how much medical intervention they wanted should the procedure cause Boemer to go into labor and Lynlee be born that night.
“The surgery is extremely difficult,” Olutoye told FoxNews.com. “What makes it difficult is you can’t guarantee what the outcome will be. We’re going to give Lynlee the best chance, but we also know we’re going in at a time when the heart is already sick."
A vital part of the surgery involves fastening the amniotic sac to the uterus so it can be mended after the procedure. Doing so allows the uterus and amniotic sac to continue to grow with the developing child, Olutoye said.
Another concern was preserving the structure around Lynlee’s already developed anus and reproductive organs, as part of the tumor extended to her pelvic area. The five-hour surgery resulted in removal of 90 percent of the tumor and minimal leakage from the amniotic sac. Boemer was placed on bed rest and given fluids for the next 13 weeks until Lynlee was born for a second time, this time to stake her claim in the world. After her birth, doctors removed the remaining 10 percent of the tumor.
“The fact that they were able to put her successfully back in and sew me back up, and the fact that I didn’t go into labor within the first couple of weeks was a miracle,” Boemer said. “Those first few days and weeks were very risky, and they were concerned that I might spontaneously go into labor.”
Aside from what is impossible to determine about her bowel control and muscle development, Lynlee was born with only one functioning kidney. While Boemer said doctors believe she will do fine with one kidney, she may need future reconstructive surgery on her glute muscles if they do not strengthen on their own.
Throughout her stay in Houston, Boemer had limited contact with her children, which was one of the biggest challenges as she underwent surgery and recovered. She credits her husband, relatives and friends with helping them get through the trying ordeal as a family, and said the staff at Texas Children’s showed her that despite a harrowing medical prognosis, it is possible to keep faith in your child.
“I want everyone to know that if they go and have an ultrasound and a scan, and they’re given bad news about their baby, don’t lose hope,” Boemer said. “There are medical advancements out there than can help in certain situations.”