In 2013, Bobby and Shelly Ross found out at an 18-week ultrasound that their daughter had spina bifida, which is a type of neural tube defect and can occur at varying severities.
Tragically, 68% of unborn children who are diagnosed with spina bifida in utero die from abortion.
Additionally, the couple was told that their baby might have club feet, be paralyzed from the waste down, have urinary and bowel problems and need a shunt for hydrocephalus. They were given three choices: they could have an abortion, have traditional surgery after the baby was born or try fetal surgery. Shelly said,”…Doctors told us the babies who had the prenatal surgery for spina bifida would often end up having improved results as far as needing shunts for hydrocephalus. They also had better outcomes with mobility.”
Bobby and Kelly refused abortion and decided to pursue fetal surgery. Shelly shared more about the procedure with NBC News.
She said,“I did a two-day evaluation to see if I qualified. The defect had to be a certain size, the mother couldn’t have had a history of preterm labor and she couldn’t be above a certain BMI. Doctors did a fetal MRI, a two-hour ultrasound to look at every detail of the baby, blood work, and we met with a bunch of different doctors. After all that, I didn’t qualify until a month later, so we had lots of time to make the decision. With the fetal surgery, there’s a risk for preterm labor or just for the baby not to make it through the operation. The risks for me included infection and complications in future pregnancies because the surgery is very invasive.”
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On December 4, 2013, when Shelly was 23-weeks pregnant, surgeons performed the procedure to correct the defect in her baby’s spine.
Shelly said, “They cut open my lower belly and then my uterus. The baby was positioned so they didn’t actually have to take her out. They just exposed her back and used her own tissue to seal up that defect on her spine. Then, they had to replace the amniotic fluid that was lost during the surgery.”
Thankfully, the surgery was successful and doctors told Shelly that it went exactly as they had hoped. However, Shelly’s recovery was painful because her child was still growing after the surgery.
She said, “I was in pain because of all of the incisions in multiple layers and because of the baby moving. As soon as she woke up from her anesthesia, she would move around and kick at a fresh surgery site. I was on strict bedrest for three weeks after the surgery. I could get up once a day to shower quickly and go to the bathroom. That was so hard because I’m a very active person. After that, I could go downstairs for one meal a day.”
At 36-weeks, Shelly delivered her daughter, Luelle, and now she is so thankful she had the operation.
Shelly said, “Today, she’s doing fantastic. She’s being closely monitored for hydrocephalus, but she has no shunt and doctors haven’t needed to do any interventions. She is crawling great and she has started in the last couple of weeks pulling up to a stand on things. We never knew if we’d see her do that.She does have some weakness in her feet and lower legs, but not paralysis. She’s hesitant to lift her foot up to take a step so we’re working on that with physical therapy. She hasn’t had any bladder or bowel issues so far— it’s another thing we’re monitoring. She’s delayed verbally, which can be from the hindbrain herniation that was present in utero before they did the surgery.”
She concluded, “With spina bifida, you have things that you need to watch for your whole life. If scar tissue develops on the spinal cord, it could do damage to the nerves. We’re absolutely glad we did the surgery. It really was the right decision for us. She’s doing better than most people would have expected. We don’t take that for granted. We really want to view this as a gift. She’s just a happy girl. She just is always smiling and so sweet. We’re just so thankful.”