A baby girl born twice after being taken out of her mother’s womb mid-pregnancy for life-saving surgery and then returned is now “thriving and doing well” at home.
Doctors discovered US baby Lynlee Hope Boemer had a very rare tumour on her spine when her mum Margaret was just 16 weeks pregnant.
The mass called a Sacrococcygeal Teratoma (SCT) was growing from her tailbone area and diverting so much blood away from her, she was at risk of heart failure.
On a GoFundMe page set up to help raise money to support the family’s quest to save her daughter, Margaret reveals, while doctors at one Houston hospital advised her to terminate the pregnancy, another, Texas Children’s Hospital, gave her and her husband Jeff some hope.
“At one hospital we were strongly encouraged to terminate the pregnancy due to the extremely large size of our baby’s tumour and the risks to my health,” Margaret wrote.
“Texas Children’s gave us a more positive, yet realistic, option of having Open Fetal Surgery to remove a large portion of Lynlee’s tumour to try to save her.
“They told us she had a 50 per cent chance of making it with the surgery.
“Jeff and I were in agreement that termination was not an option and we wanted to give Lynlee a chance at life by going with Texas Children’s and having Open Fetal Surgery.”
At just under 24 weeks gestation, surgeons performed the life-saving 20-minute surgery on Lynlee before putting her back in the safety of her mother’s womb.
“The doctors cut me open a little larger than a C-section and removed my uterus,” Margaret wrote. “They then made a very large incision in my uterus to access Lynlee and to attempt to remove the tumour. The tumour was so large they had to puncture the fluid filled part and then cut out the vascular part of the tumour.”
Margaret says doctors were successful in removing 90 per cent of the tumour.
“It was a shock to Lynlee’s system so they did have to help restart her heart and give her a blood transfusion,” she wrote. “Once she was stable they put her back in and sewed up my uterus and abdomen. Then it became a wait-and-see game. The next few days were very critical and I remained in the hospital for a week. Lynlee slowly recovered from the invasive surgery and began having a normal heartbeat.”
In a statement on her Facebook page, Margaret explains she spent three months on bed rest until doctors re-delivered Lynlee at 36 weeks, five days via C-Section on June 6.
At just eight days old, Lynlee underwent follow-up surgery to remove the remaining part of tumour, regrowth and her coccyx to try to prevent regrowth of the tumour.
“Lynlee is thriving and doing well,” Margaret wrote. “She has a very large scar across her bottom and lower back from the removal of the SCT. Lynlee has follow-up appointments at Texas Children’s with Dr Olutoye every three months and will be followed until she is an adult at Texas Children’s Hospital.”
Margaret says her little girl may need reconstructive surgery on her lower back and bottom in the future, and they are yet to see if she might also have some bowel issues due to damage from the tumour.
She hopes sharing Lynlee’s story will help others.
“Our reason for sharing Lynlee’s story is so that others who are given similar news of a diagnosis have hope and information that there are options other than termination,” Margaret wrote. “We also want to raise awareness of SCT. SCT is a rare medical condition that affects 1 in about every 35,000 to 40,000 births. Usually the tumour can be removed after birth but in rare cases, like Lynlee’s, fetal intervention is needed. “