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Lily's Myelomeningocele Story 

As she lay on the ultrasound table, Candace Overkamp knew something was different. The technician seemed to be spending a longer time than normal looking at her unborn baby girl. “She was concentrating on the baby’s head more than we remembered from our first baby’s ultrasounds,” recalls Candace.

As the technician finished up the ultrasound, Candace nervously arose. She and her husband were escorted back to their doctor’s office. “The doctor told us that the baby had a lemon shaped head and we needed to see a specialist to further investigate the potential condition that was observed,” explains Candace.

The couple was referred to the SSM Health St. Louis Fetal Care Institute. The St. Louis Fetal Care Institute, which is a collaboration between SSM Health St. Mary’s Hospital - St. Louis, SSM Health Cardinal Glennon Children’s Hospital and the St. Louis University School of Medicine, provides unique, life saving options for families facing these types of fetal diagnosis.

The St. Louis Fetal Care Institute had recently performed groundbreaking fetal surgery to repair the spina bifida spinal defect while the baby was still in the womb. The surgery can help improve the baby’s chances of walking and can decrease the need for a shunt. “We were going to do whatever it took to ensure that Lily was a happy, healthy child,” she remembers.

The couple took the hour long journey from their home in Warrenton, MO to St. Louis where Candace received a more in-depth Level II ultrasound. This test showed doctors that baby Lily actually had myelomeningocele, the most severe form of spina bifida, where the fetus’ spinal cord fails to close during development. This happens between 20 and 28 days of gestation, often before a woman knows she is pregnant. Because the spinal cord does not close, much of the nerves are exposed, resulting in damage to the cord as the pregnancy continues. Spina bifida can impact the nervous system, bones and muscles, kidneys and bladder.

The location on the spine where the undeveloped area occurs is called the level of the spina bifida. Because nerve damage at the site of the spina bifida prevents function below that level, the higher the spina bifida level, the greater the impact on normal development and function. The opening in the spinal cord also results in loss of the fluid surrounding the nervous system. This causes the brain to be positioned further down into the upper spinal column than normal, which is called an Arnold Chiari II malformation. When this happens, the normal flow of fluid out of the brain is obstructed, causing hydrocephalus, an excess of cerebrospinal fluid within the brain. After birth, most children with hydrocephalus need to have the extra fluid shunted out of the brain into the abdomen via a ventriculoperitoneal (VP) shunt. Fetal surgery has been shown to reduce the need for this shunt.

“We were extremely distraught at this news, but we had a whole support team which went through all of the options including fetal surgery and waiting for surgery after she is born,” she recalls. “We had a meeting with all the surgeons who would be doing the fetal surgery including the nurses, genetic counselor, neonatologist, even the chaplain for prayer, which I loved! At this point we were praying a lot for the wisdom to make the right decision for our unborn daughter. We decided that the fetal surgery was the best option for Lily. We wanted to do everything that we could to give our child the best life she could have,” recalls Candace. 

On June 28, 2011, when she was 26-weeks pregnant, Candace went in for fetal surgery to repair Lily’s myelomeningocele. Open fetal surgery for spina bifida repair involves making a small opening in the uterus, then closing the spinal cord opening just like after birth. The womb is repaired and the mother is in the hospital for four to five days. Despite an uncomplicated fetal operation and recovery, Candace’s water broke at 27 weeks. “It was 3:30 in the morning and we made the call to Katie at the Fetal Care Institute,” says Candace. “The whole team immediately stepped in to help. Katie sent us straight to St. Mary’s where the team put me on magnesium, and strict hospital bed rest to slow the labor process, and keep the contractions at bay.”

Luckily, Lilian Grace (Lily) remained in Candace for another four weeks before making her entrance to the world on August 3, 2011. After Lily was born there was still a small amount of spinal fluid leaking, so an operation was performed that evening and a patch using her own skin was created to protect the spine. Over the next seven and a half weeks Lily continued to grow in the NICU (Neonatal Intensive Care Unit) at Cardinal Glennon. “The Cardinal Glennon NICU was wonderful with her! I did not even feel as though I had to stay every night with her after the first week,” she says.

As of the beginning of 2012, Lily had not required a VP shunt, had full use of her legs, and was showing no signs of bladder problems. “We are very blessed that we were able to find The Fetal Care Institute and that God gave them the ability to help Lily to grow up and have the best life possible! This experience has taught us so much, but the main thing is that miracles are possible. There is always hope in any situation,” says Candace. She is enjoying life with her family.


Learn more about open fetal myelmeningocele repair.


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