Lynlee Boemer, a miracle baby who underwent fetal surgery performed at Texas Children’s Fetal Center to remove a large tumor (Sacrococcygeal Teratoma) growing from her spine, celebrated her first birthday on June 6.
Last week, Jeff and Margaret Boemer were at Texas Children’s for their daughter’s follow-up clinic appointment with Dr. Oluyinka Olutoye, co-director of the Fetal Center. Since their daughter’s surgery, Lynlee is meeting all of her milestones and is very active. She loves to crawl, pull up to stand and has several favorite words she likes to say like, “hi, bye-bye and Mama and Da-Da.”
“She has been in physical therapy, and thankfully, we have been able to take a break from that since she is doing so well,” said Lynlee’s mom Margaret Boemer. “She’s pulling up and almost walking. But we’re also seeing other doctors to check for GI and urology type issues. But other than that, she is doing really, really well.”
Boemer says one of the biggest blessings of sharing Lynlee’s story has been that other women pregnant with babies who have the same diagnosis as Lynlee are reaching out to her via social media, and she is able to give them hope and often refers them to Texas Children’s Fetal Center.
Boemer was 23 weeks and 5 days pregnant with her daughter Lynlee when she underwent emergency fetal surgery to remove the baby’s Sacrococcygeal Teratoma (SCT), a large vascular mass. Occurring in only 1 in 40,000 pregnancies, Lynlee’s SCT was robbing her blood supply and would eventually cause heart failure.
Lynlee had a 50/50 chance of survival. Olutoye and a surgical team worked for approximately five hours to remove the tumor growing from the baby’s tailbone, which was almost larger than the baby herself.
During the surgery, Lynlee’s heart stopped and had to be re-started and she was also given a blood transfusion. Surgeons made an incision in Margaret’s uterus and pulled out the baby from her legs to her torso so they could remove the tumor. Once the incision was closed, Lynlee was placed back inside of her mother and Margaret’s uterus was sewn shut and she was on bed rest for the remainder of her pregnancy. Surgeons were able to remove about 90 percent of the tumor, but as the pregnancy progressed, the tumor began to grow again.
Margaret was 36 weeks pregnant when Lynlee Hope was born for the second time via C-section on June 6, 2016 weighing 5 lbs., 5 oz. Lynlee was taken to the level 3 NICU for an evaluation, but was doing so well she was transferred to the level 2 nursery. At 8 days old, Lynlee underwent a second surgery to remove the rest of the tumor from her tailbone including some that had grown inside of her body.
Olutoye removed the remaining SCT tissue and Lynlee recovered wonderfully in the NICU and was able to go home just weeks after her surgery.
The family, from Lewisville, Texas, is now enjoying life at home as a family of five and they come to Texas Children’s for check-ups as Lynlee grows.
“We’re thankful that we gave her a chance at life,” Boemer said. “And we’re very grateful for all that the doctors at Texas Children’s have done to give her that life and all the wonderful care that they gave me and Lynlee while we were here.”