In the fall of 2015, Nicole Carlin and her husband were overjoyed to learn they were pregnant with their second child. During the first few months of her pregnancy, Nicole felt good and things were progressing as expected. However, after her 16-week appointment, which included an ultrasound, Nicole knew something was wrong when the doctor called with results. Her doctor explained it appeared her baby had spina bifida, which occurs in about one of 3,000 pregnancies in the United States each year. Nicole and her husband were instructed to undergo additional tests at the Midwest Fetal Care Center, a collaboration between Children’s Minnesota and Allina Health, to confirm the findings and develop a treatment plan.
Nicole arrived at the Midwest Fetal Care Center the day before Christmas Eve and doctors confirmed her unborn baby had a severe form of spina bifida. Spina bifida (literally meaning “split spine”) occurs in the womb around three to four weeks after conception when the spinal column does not close completely, leaving part of the spinal cord exposed. This can cause traumatic injury to the spinal cord, a buildup of fluid in the brain, and other significant physical and neurological damage that is present at birth, severely impacting the life of the child.
Over the next several weeks, Nicole talked to her care team and researched treatment options. Nicole’s care team determined that she was an excellent candidate for a surgery to decrease and reverse some of the impact of spina bifida symptoms while the baby was still in-utero – a surgery that doctors perform routinely at very few centers in North America. Because of Nicole’s three-year-old son and the incredible support system of her family, she wanted to stay in the Twin Cities if possible.
Nicole was introduced to Dr. Joseph Lillegard, pediatric and fetal surgeon at the Midwest Fetal Care Center. Dr. Lillegard explained that he was working to keep the family in the Twin Cities for surgery, and a few weeks later, called Nicole to tell her they could do the surgery at the Midwest Fetal Care Center. Leading up to the surgery, Nicole joined online groups of other moms who had gone through this type of fetal surgery. “In addition to my clinical team, speaking with other moms about their experience was reassuring and helped normalize the experience,” Nicole recalled. An extensive group of specialists, including teams for mom and baby – approximately 20 clinicians and nurse specialists – is needed to perform open fetal surgery and care for mom afterwards.
The fetal surgery was scheduled for Feb. 10, 2016, at 25 weeks gestation. The complex procedure involves placing the mom and fetus under general anesthesia so that both can be operated on simultaneously. A lower abdominal incision was made on Nicole, much like a Cesarean-section (C-section) incision, and with some dissection the uterus was exposed. After using medications to relax the uterus, the surgical team used ultrasound imaging to make a safe incision into the uterus, exposing the unborn baby. With the baby’s spine in view the team closed the skin and special layers of her spinal cord, thereby stopping the devastating injury to the exposed nerves. At the completion of the two hour surgery Nicole was safely wheeled to her recovery room with her unborn baby still inside her womb recovering from the big day. The surgery was complete and all were safe.
Following the surgery, the priority was for Nicole to make it to 36 weeks gestation, when a planned C-section would be performed to deliver her baby. Immediately after the surgery Nicole spent a week in the hospital and then two weeks at home on limited activity, followed by moderate rest leading up to the due date. “The support from my husband and family allowed me to take time to rest and focus on myself and the baby,” recalls Nicole.
On April 25, after 36 weeks gestation, Clara Carlin was welcomed into the world at The Mother Baby Center. Nicole was nervous about the birth, but knew she was in good hands with her team of doctors and other clinicians from Children’s Minnesota and Allina Health. Nicole and her husband fondly recall briefly holding their new baby before she was taken to the Children’s Minnesota neonatal intensive care unit (NICU) for monitoring.
During Clara’s time in the NICU, Nicole met with the multidisciplinary team of experts that would treat Clara throughout her journey to explain the treatment program and answer questions. “I’m a firm believer in early intervention,” Nicole states. “So meeting the doctors we’d work with and understanding how to proactively address any remaining symptoms Clara would have as a result of the spina bifida was important to me and my husband. We want to take an active role in our baby’s healthy development.”
Clara’s care team includes her fetal surgeon, neurosurgeon, neonatologist, urologist, orthopedic surgeon and physical and occupational rehabilitation specialists. This well-integrated care team works with Clara and her family on physical and neurological development and will treat any remaining symptoms resulting from her spina bifida.
Today, Clara is nine months old. She is healthy, happy and doing well. Many of the major complications related to spina bifida seem to be reduced or reversed. She has no significant hydrocephalus (fluid on the brain) and has not needed a shunt. She moves her legs well with good sensation to her lower extremities and is able to empty her bladder and stool without any major problems. It is still early for baby Clara, but her care team hopes that she will continue to be like many children who undergo fetal surgery for spina bifida and have a chance at enjoying the great experiences of life without many of the debilitating affects of this devastating disease.