From Georgia to Houston: Our spina bifida fetal surgery journey

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Our journey began when I was 18 weeks and four days pregnant. Our daughter, Harper, was diagnosed with spina bifida during a routine anatomy scan. The idea something could be wrong never even entered our minds. We were fully prepared to go back to work that day with perfect ultrasound pictures in hand to show off to our family and friends, but God had a different plan for us. Instead, our OB/GYN came in the room and we heard the words, “It looks like spina bifida.” Our whole world flipped upside down as we tried to understand how something that seemed so terrible could be happening to us. It didn’t seem real. We felt unbelievably sad and helpless, a feeling that didn’t go away for quite some time.

The 24 hours after that initial diagnosis moved quickly, and by the end of the next day we had a much better understanding of what this news meant for our growing family. We were sent to a specialist where we confirmed that along with spina bifida, Harper also had hydrocephalus and clubbed feet. We were given our options, one of which included intrauterine surgery to close the lesion on our sweet girl’s back. Our doctor referred us to Texas Children’s Hospital and we had the chance to speak with Dr. Belfort over the phone about the work they were doing to repair spina bifida lesions. The fact that he took time out of his day to speak with us so sincerely during the worst moments of our lives meant so much to us. We took a few days to weigh our options and make sure we were making the best decision for our baby, but to be honest, we were pretty convinced about this surgery from the beginning. We always felt like the path was laid out for us purposefully.

Over the next couple weeks, we had a fetal MRI and an amniocentesis. We then traveled from our home in Alpharetta, Georgia, to Houston for two days of consultations, where it was determined we were candidates for fetal surgery. But we still had a decision to make! I think it’s important to note each and every doctor we met with made it clear to us this was our choice and they would support us in whatever we felt was best for our family. After each meeting, my husband and I would touch base and make sure we were still on the same page. The decision to move forward with fetoscopic surgery was an easy one for us. We felt like we were right where we needed to be and we were grateful we had the chance to help Harper in this way.

We headed back to Georgia to get ready to return to Houston just two weeks later. We arrived a couple of days early because we had a few more appointments before surgery. We had a growth ultrasound to make sure we had an accurate weight for Harper since she would be given medication during the surgery. We also had a transfer of care appointment and a pre-op appointment with anesthesia. Finally, the afternoon before surgery, we had what is referred to as a “family meeting” – everyone involved in our care gathered together in one room and allowed us to ask questions and make sure we were all on the same page. I think I had almost three pages worth of questions and the team took the time to answer each one! My parents and my mother-in-law were also in town for the surgery and were encouraged to attend the family meeting and bring their questions as well. This meeting was so valuable to us and we were grateful that everyone carved the time out of their very busy schedules.

On May 4, 2017, my daughter and I underwent fetoscopic spina bifida repair together at 24 weeks and 4 days gestation. We arrived at the hospital early that morning. In order to minimize the time we were under anesthesia, we were completely prepped and in the OR before they put me to sleep. I was nervous about this – I thought I would feel very alone and anxious, but it was the complete opposite. A nurse and two anesthesiologists were with me the entire time and made me feel extremely comfortable. The surgery lasted about four hours. Along with their team, Dr. Whitehead and Dr. Belfort closed the lesion in Harper’s back and the surgery was a success!

IMG_1158The first couple of days after surgery were rough. I was kept on a drug called magnesium sulfate to calm my uterus and prevent contractions. I was also kept on an epidural for the same reason, as well as to help with pain control. I felt extremely weak and could barely keep my eyes open most of the time. Harper continued to thrive through all of this! We were kept on the fetal monitor 24/7 so we could hear her heartbeat and movements constantly, which is the sweetest sound in the world, especially after fetal surgery. We were able to come completely off the magnesium sulfate and have the epidural removed on the third day. I felt a lot better and much more alert, but I honestly didn’t think I would be in so much pain. I had never had major surgery before so I had no idea what to expect, but I thought my body would bounce back more quickly than it did. I had to learn to give myself some grace and take it one step at a time. My husband was wonderful and so supportive – I couldn’t have asked for more. He was constantly reminding me to breath and to drink more water. He held my hand and encouraged me when I felt weak and frustrated. This journey is without a doubt the hardest thing we have faced and I can’t say enough about how glad I am to have him by my side through it all. We were also unbelievably thankful for the amazing nurses and staff members at Texas Children’s who took such great care of us. They are some truly special people!

We were released from the hospital on day five and headed back to what we refer to as our Houston home – an apartment about a mile from the hospital. It’s been two weeks now since our surgery and each day has been a little easier. I’ve really just started feeling much better the past couple of days. As painful and as challenging as the last two weeks have been, there has not been a single moment where I’ve felt like we didn’t do the right thing by having this surgery. I’m amazed by our incredible doctors and the medical advances they are making in this field and I love that we get to be a part of it. We feel like we are in the very best hands; it really is like a family. I feel our daughter move and kick her little legs every day, and each time I smile and praise God we were given this opportunity. There are still hard days, but we no longer feel helpless – we are confident we’ve done everything in our power to help our daughter and give her the best shot possible in life. We have a long way to go on this journey but we are truly optimistic about the days to come, and we can’t wait to experience the joy this little girl will bring to the world.

About Haley Spivey, patient

When I was 18 weeks and 4 days pregnant, our daughter Harper was diagnosed with spina bifida.
Posted in Fetal Center, Patient Voices, Pregnancy, Surgery

One Response to From Georgia to Houston: Our spina bifida fetal surgery journey

  1. Melanie Griffin says:

    The love and bond between you, Colby, and Harper is amazingly strong. Clearly God has given y’all the strength you need to get through this. I have known you a long time young lady. I must say you make me so proud. What a wonderful and loving woman you grew up to be. You and Colby are going to be such awesome parents. The hope, joy, and especially the love you will have for your precious baby will amaze you. God bless

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