Bellamy’s story: Fetoscopic surgery for spina bifida

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Seventeen weeks into my pregnancy it was confirmed that our sweet baby girl had spina bifida. How could this happen? What did that mean? What IS spina bifida? Our world was rocked with the news that our precious daughter would have special needs.

We spoke with our high-risk doctor and were given options on how to proceed with the pregnancy. We wanted to give her the best possible chance she had at thriving in this world, so we decided to pursue in-utero fetal surgery and our doctor put us in contact with Texas Children’s Fetal Center.

After spending hours on the phone making a week’s worth of appointments, I packed up myself, my 2-and-a-half year old son and several months’ worth of things we needed then drove to Houston. At the end of our evaluation, we learned we were candidates for fetal surgery and would be participating in a study for an experimental fetoscopic surgery. We rented an apartment through one of the church ministry groups in the area and my mom stayed with me to be my care taker and look after my son while my husband stayed behind in Florida to continue working.

At 24 weeks pregnant I was wheeled into a six-hour surgery surrounded by a team of 20 surgeons and hospital staff to repair the opening in my baby’s spine. Everything went perfectly. My recovery was, thankfully, uneventful and all of the nurses and doctors were thrilled with how the baby and I were doing.

At 34 weeks pregnant, I went to the hospital for decreased fetal movement. I hadn’t felt my baby move in six hours. Once they connected me to the fetal Doppler, they saw my unborn daughter was having a deep heart deceleration. I was admitted to the hospital for continuous monitoring and daily ultrasounds for a week. At 35 weeks and 2 days, my baby’s heart rate dipped down and did not recover. Within 10 minutes, I was put under and my baby was delivered via emergency C-section and needed to be resuscitated.

Bellamy Noelle was born on Dec. 11, 2016 at 8:43 a.m. and weighed a whole 5 pounds. She was perfect. She spent 10 days in the neonatal intensive care unit (NICU). My husband flew out to meet us and we drove home as a family of four on Christmas Eve.

Today, Bellamy is 10 months old and we are blessed to say they have been pretty uneventful. She has full feeling and movement down to her toes, currently does not have a shunt, and at this time shows normal bladder function. She is sitting up unassisted and has the most adorable four teeth coming in. She is the happiest baby I’ve ever seen, constantly smiling and laughing. She’s currently receiving physical therapy and will soon start speech therapy for her struggle with solid foods. This little bundle has completed our family in the best way and we couldn’t imagine life without her.

I will forever be thankful for everyone involved with our time at Texas Children’s. I could not have imagined a more positive experience while going through something so scary. Every doctor, nurse and coordinator there will forever hold a special place in our hearts.

Posted in Fetal Center, Guest Post, Neonatology, NICU, Surgery

One Response to Bellamy’s story: Fetoscopic surgery for spina bifida

  1. Cynthia says:

    It did my heart good to read your story. My precious daughter, Julie Elizabeth, was born on November 28, 1971 in Houston, Texas. She was born with the severest case of spina bifida in Texas at that time. Because she was 5 pounds, the doctors said she would not survive surgery. She passed away on December 8th of that year. I allowed an autopsy to be done on her because I wanted to help other children in the future. This has been blessing to me knowing my daughter may have had a hand in research. Thank you and God bless!

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