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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Dayna Sargent

About the Author: Dayna Sargent

Dayna Sargent is a stay at home mom of four daughters. She was a mental health therapist before becoming a mama. Special needs advocate and public speaker.

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Comments

  1. auntie May 19, 15:43
    Dayna is the most special person. She and her husband are devoted parents and people,. Am so proud to be part of their lives. You go girl! JOY
  2. Dayna's Mom May 19, 23:43
    That darling little girl is teaching all of us so much. Anna is a trooper, she always has a big smile that lights up the room and melts my heart. Dayna is an amazing Mom. I am so proud of her.
  3. Mrs. Jackman May 20, 15:24
    I am privileged to know Dayna and her wonderful mother, so I'm not surprised that this third generation baby girl is vey special!!! I love seeing pictures of little Anna And her grandma, on Facebook, interacting together. They even look alike. Blessings are very apparent in the Sargent home!?
  4. BHanna November 07, 13:28
    We are on a similar journey. Our baby girl is just about 7 months now and doing wonderful thus far. She was born at 37 weeks, and we did not qualify for the fetal surgery due to her opening being so low. Thank you for sharing your story. It is so comforting to me reading how others have been through a similar situation.
  5. TQW January 04, 20:41
    I am a 62 year old Mother of three daughters and one Grand-daughter. My first daughter was born in 1972 before the day of Ultra-sound and Amniocentesis. I was 17 years old at the time. You can only imagine the shock and horror to me, my husband and families when we learned our precious baby had such a horrible defect. At the time this was a death sentence. The doctors told us to take her home and love her as long as we had her. Another doctor tried to talk us into institutionalizing her. I almost threw him out on his ear! I may have only been 17 years old but this was MY baby and I was going to take care of her to the best of my ability. During her 15 day stay in the hospital we had a Neurosurgical consult as well as the Neonatal Intensive Care physicians telling us what to expect. The consensus was to take her home and love her. If I heard that one more time I was going to explode! One of the Neurosurgeons told me to bring her to his office after she went home so that his partner could weigh in. I thought about that a lot but decided that I couldn't bare to hear the same thing over again," take her home and love her until......". She was discharged home at 15 days of age with a follow up appointment with the Pediatrician within a week. So we showed up for that appointment and the Dr., couldn't believe that not only had she survived, she had thrived! He encouraged me to take her to the Neurosurgeon for another opinion. Which i did. The outcome was positive and they did a shunt to relieve the pressure on her brain caused by the excess fluid. She was 6 weeks old at this time and the surgery was successful. She did very well after that up until her first birthday. She did have one other surgery this time to drain fluid from the meningocele. You see at the time she was born they could not do surgery in utero or after successfully as they do today. Her lesion was about the size of an orange. They were waiting for her to grow enough that they could remove the lesion and graft skin to cover it. She never grew enough for that surgery to happen. She died when she was 2 years and 4 months old. Her death was devastating to say the least. The doctors tried their best to get me to have another baby before she died. But, I told them no, I was devoting all the love, care and attention to her while I had her! Had it not been for the fact that I had my Christian faith and the love and support of my family I would have crumbled. But I had the hope and faith of having another baby. So, 11 months after my precious baby died I had another baby. She was perfectly healthy! And, at that time they didn't recommend amnio or ultra sounds. Keep in mind this was 1975. By 1978 I was pregnant again with baby #3 and had a new OB/GYN group. They insisted on amnio and Ultra sounds! So, at 16 weeks I had to travel to another city to have these done. Now, we have these procedures available and a Medical school at our hospital system. My Ultrasound and amnio came out normal and at 40 weeks I had another beautiful healthy baby girl! it's been 43 years now and I don't regret one second of my time with my Angel. That is what she was, You see God does not give these special babies to just anyone. He chooses who he gives them to. Take them with pride, honor and respect. Enjoy every second that you have with them because they are God's special Angel's. They will give you more love and devotion than you will ever encounter. God Bless! Mimi