As every mother wishes, Erika was hoping her baby was healthy and without complications during her routine ultrasound at 21 weeks. After a previous blood test had come back negative for neural tube defects, which would have pointed towards spina bifida, Erika thought all was well. However, after her ultrasound, thoughts of a smooth pregnancy and healthy baby were put on hold momentarily. Doctors found her baby showed signs related to Myelomeningocele (MMC), a severe form of spina bifida.
MMC is a birth defect in which the bones of the baby’s spine do not form or close properly, leaving an opening in the baby’s back that can result in neurological impairment below the level of the defect including paralysis/weakness of the legs, bladder/bowel problems, incontinence and sexual dysfunction. Since Erika is a registered nurse herself, she was familiar with MMC. “I knew the basics about spina bifida and tried to inform myself on the rest because I still didn’t know everything,” she said.
After Erika’s baby was diagnosed, the medical director at her local hospital referred her to The Chicago Institute for Fetal Health at Lurie Children’s. “I was scared but felt comfortable with the doctors. I was in good hands,” said Erika.
Director of The Chicago Institute for Fetal Health, Dr. Aimen Shaaban, gave Erika and her husband all of the possible options including a prenatal repair, postnatal repair, and others. “There are so many things that could happen in any scenario. The team was upfront with the possible outcomes,” said Erika. “You think about the child. It’s your baby. You want to do what’s best for your baby.”
In Erika’s case, following through with a prenatal repair was the best option for her. “My family was open-minded with what my husband and I decided,” said Erika. “All the information we were given showed we were towards the better end of the spectrum.” Since the location of the MMC was towards the bottom of the spine and the baby’s legs were moving, having the repair done prenatally would increase the baby’s chances of being able to walk one day and decrease the odds of needing a shunt.
At 24.6 weeks of gestation, Erika had the prenatal repair. To ensure the baby stayed healthy, Erika had to remain on modified bedrest until the baby was born. “That was the hardest part because I am so used to being on the go, but it’s necessary,” said Erika.
Finally, Erika gave birth to her baby boy, Caleb, at just 35.2 weeks of pregnancy. Because Caleb was born prematurely, he had some trouble feeding, which extended their stay at Lurie Children’s to a full month. “The fact that we have this amazing hospital so close to home is such a blessing,” said Erika. Erika and her husband made sure to visit Caleb every day while he was in the NICU. However, they weren’t his only visitors. “Dr. Shaaban is great. He is the one person who visited us every day, no matter the time of day,” she said.
Caleb is now two months old and sees Dr. Robin Bowman, the neurosurgeon who patched up the MMC defect, at Lurie Children’s Spina Bifida Multidisciplinary Center every two weeks for a follow-up appointment. “She is amazing and their team is wonderful. Caleb has routine tests to monitor his progress,” said Erika. “The follow-up care is manageable and do-able. I set myself up for it, so I knew I had to commit to the appointments and all of this.”
For any future mothers who may have to face the diagnosis of a baby with spina bifida, Erika has some advice to share. “Make sure whatever decision you make is the best one for you and your family. It’s a mutual effort. The support from your family is needed. Ask as many questions as you need to and stay informed. Be prepared to make any adjustments because there is always the unknown, so remain open-minded.”
The Chicago Institute for Fetal Health
With more than 40 years’ experience, The Chicago Institute for Fetal Health is a leader in the research and care of pregnant women with fetal complications. As one of only a few comprehensive fetal centers in the country, the institute is able to offer pre-birth counseling and care, as well as corrective fetal intervention if needed, including both twin to twin transfusion syndrome (TTTS) laser treatments and spina bifida (myelomeningocele – MMC) repair in utero, among others. In fact, we are the only fetal center in Illinois that performs MMC repair in utero.
Lurie Children’s has one of the largest Spina Bifida Multi-Disciplinary Clinics in the world. The team is comprised of experts from a variety of fields including pediatric neurosurgery, orthopaedic surgery, urology, physical medicine and rehabilitation, social work, and physical/occupational therapy.