Cincinnati Children's Blog

Myelomeningocele Surgery: Our Biggest and Hardest Decision

Myelomeningocele Surgery: Our Biggest and Hardest Decision

Anna Joy is the youngest of four incredible little girls. My pregnancy with her was going smoothly — I was super sick with “all day sickness” just like I was with her older sisters. Nothing seemed amiss.

At the routine 20-week ultrasound everything changed. I remember lying there talking with the tech about what a blessing babies are as she scanned my belly. I talked about how having a baby is such a leap of faith. You see, our oldest daughter has a mild type of spina bifida called meningocele. We were not strangers to what can go “wrong” during a pregnancy.

I was so excited and hopeful as the tech was pointing out all of Anna’s sweet tiny baby parts, then she stopped scanning and excused herself. I knew right then and there that something was wrong. The tech and the doctor came into the room and they told me they could not find my baby’s cerebellum. And her brain was measuring very small.

I was devastated. They referred me to a specialist for more testing two days later. I left the doctor’s office and drove myself home, feeling shocked and scared to death that our baby girl was going to die. I called my husband on the way home and told him the little that I knew  –  that something was very wrong with our baby.

Two days later we went to the appointment with the specialist where they diagnosed our baby girl with a severe type of spina bifida called myelomeningocele and a brain malformation called Arnold Chiari. Spina bifida, to explain it simply is like being born with a spinal cord injury.

Our world was turned upside down. The following weeks and months were some of the most difficult times in our lives.

Once we learned of Anna’s diagnosis we spent day after day, test after test at Cincinnati Children’s to learn as much as we could about the severity of her spina bifida and how we could best help her.

There were two options. One option was for her to have surgery after she was born to place her spinal cord back inside her body. A newer option called open fetal surgery, was to have surgery while I was still pregnant with Anna. They would cut through me to get to her and place her spinal cord back into her body. They would then close us both back up and I would be placed on strict bedrest until she was born.

Having fetal surgery could stop any more damage from occurring once they placed her spinal cord back into her body. The benefits could be a better chance of walking, less paralysis, less chance of hydrocephalus and her brain malformation correcting itself. These are all amazing possible benefits but they are not without great risk. The biggest risk being prematurity. Some babies have been born extremely early, some have been born right after fetal surgery and some have not survived. It was the biggest and hardest decision we have ever had to face.

After much research, more tests and meetings and countless prayers we decided to have the fetal surgery for Anna. She was 24 weeks gestation and weighed just over 1 pound. I felt peaceful the morning of surgery, in good spirits as they prepped me to go in. It wasn’t until they wheeled me into the giant sterile operating room filled with close to 30 medical specialists that the fear set in again and it set in deep. I remember feeling so scared and unsure if I could really do this. All of my concern was for Anna, would she be okay? Was this the right choice for her?

When I woke up after the surgery the first thing my husband told me was that Anna was okay and I was still pregnant. I was so grateful and relieved!

The goal was for Anna to be born three months later at 37 weeks along. But at 29 weeks, just five weeks after surgery, Anna arrived. We began our preemie journey in the NICU at Cincinnati Children’s and after 72 days, on her original due date, sweet Anna Joy came home. It was an amazing day! Finally all six of us were at home together! It was a feeling I will never forget.

Anna will be turning three years old this summer and she is doing incredible. She has no paralysis at all, she can feel and wiggle all the way down to her adorable toes, the severe brain malformation she had prior to surgery completely reversed and she has never developed hydrocephalus.

She is working on learning how to walk independently and just a few weeks ago she took the most beautiful independent steps she has ever taken! Every milestone she reaches is felt with indescribable joy, and justification that we made the right choice for us. Just watching her play, watching her move her feet and toes, watching her smile and laugh is a beautiful reminder of the blessing that she is.

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