Giving our son the best chance with fetal surgery for spina bifida

Finding out I was going to be a mother was one of the most surreal moments in my life. The first 17 weeks of my pregnancy were amazing; I had no morning sickness or headaches, I was just tired and experienced a tiny bit of nausea. Basically, it was the textbook pregnancy most women dream of.

With our heads still in the sky about having a baby boy, our world was about to be rocked.

Our story began on Sept. 29, 2015. It was a typical day of getting up and going to work until I received a phone call from my OB/GYN stating our amniocentesis results came back positive for a spinal birth defect. Completely in shock by the news, I asked for clarification as my eyes filled with tears and he stated, "basically your son has a hole in his spine." I did not hear anything he had to say after that; my mind went completely blank and my heart skipped a few beats.

Later that day, my husband and I went to a high-risk OB/GYN in our area where I had an ultrasound, and in under five minutes he was able to concretize our fears that our son indeed had myelomeningocele, the most severe form of spina bifida. He rattled off three issues with his brain, pointed out his clubbed feet and the large gap where his lower spine did not close properly. My eyes filled with tears and my heart began skipping beats, yet again. But at least this time, I was in the comfort of my husband's arms. We were given some options and two of those were to either have fetal surgery before 26 weeks gestation or to have postnatal surgery to close the spine.

We were pretty much silent the whole way home that evening; overwhelmed with complete and utter shock. Terminating the pregnancy was never an option, so in order to make an educated decision, we decided to investigate the pros and cons between fetal and postnatal surgery.

Only a few centers in the country perform fetal surgery, and we felt lucky to be in Houston since Texas Children’s Fetal Center is just 30 minutes away from our home. Over the next few days and weeks we were introduced to the maternal-fetal medicine staff at Texas Children’s Pavilion for Women. We were given information about the surgical options for our son and endured lots of testing on myself and our unborn child. Our first appointment with Dr. Willian E. Whitehead, a neurosurgeon, was on Oct. 26, 2015. That appointment would determine if we were good candidates for fetal surgery. He went over our MRI, echocardiogram, blood tests and ultrasound results and determined we were indeed good candidates for fetal surgery. The decision to have the fetal surgery was a very easy choice for my husband and me. It was low risk enough for our son and myself, so we felt we had to do the surgery to try and give him a better outcome. Texas Children’s Fetal Center is one of just a few centers in the country that performs this type of surgery and has had much success. So we moved forward with great faith that the surgery would result in a positive outcome.

Our surgery date came quickly and turned out to be a success after getting great results from the six week post-operative MRI showing our son's cerebellum had reversed to its proper place in his head. That same day, we were also informed my amniotic fluid had decreased by half and this was something that would be monitored very closely at my weekly visits. So this day was a bit bittersweet in the fact the surgery was successful, but even more caution needed to be taken with my decreasing fluid levels. I recall asking Dr. Whitehead, “So, what now?” He responded, “Stay pregnant as long as possible.” So now we were on high alert for premature delivery.

Eleven days after this, I was admitted to the Pavilion for Women for extremely low amniotic fluid. I was quickly pumped full of IV fluids and given an ultrasound daily to take measurements and monitor for any sign of distress in our son. Over the next couple of days, I continued to drink my weight in water and rest. Unfortunately, it was apparent I was still losing amniotic fluid somehow and my body was starting to have contractions. They were extremely mild and not painful in any way, but contractions were the last thing doctors wanted to see post fetal surgery.

The fetal monitors were tightly wrapped around my belly around-the-clock at this point and on the evening of Jan. 3, 2016 my best friend came over to visit as my husband went to pick up my mother-in-law at the airport. She witnessed the insanity of my medical team whisking me away to have an emergency C-section.

The combination of low fluid and increasing contractions was too risky and Dr. Magdalena Sanz-Cortes needed to bring our baby Owen into the world at 33 weeks, 3 days, weighing 4 pounds, 2 ounces. Luckily, my husband made it back from the airport just in time for the birth.

Owen spent 12 days in the level IV neonatal intensive care unit (NICU). In the NICU, he endured intubation post birth for 12 hours and was on CPAP for premature lung disease. He was also treated for jaundice and had a feeding tube. He then spent 28 days in the level II NICU before being discharged on Feb. 11, 2016. He was still receiving nutrition from a feeding tube, but was finally strong enough to start breast feeding. During the four weeks he spent in the level II NICU, he really just needed time to grow and gain strength before coming home. It was incredibly painful to visit and leave him in the hospital each day, but I kept thinking to myself, “This is where he needs to be and he will be home with us soon.” Owen is now 6 months old, has tripled his birth weight and grown over seven inches since birth. Since being discharged from the NICU, he has undergone an additional surgery for hydrocephalus and has had one additional hospitalization, but he continues to do very well. The surgery for hydrocephalus was an obstacle we were hoping to avoid, but we were again humbled by the severity of his condition and the demand for treatment was absolutely necessary. In just the past few months of Owen’s life, we have endured a lot of scary events, inpatient visits, ER visits, procedures and surgeries. But despite all of this, we had the amazing doctors and nurses from Texas Children’s Hospital to support us through it all.

One of my challenges since we found out about our son's diagnosis is finding the balance between his condition and remembering he is still a baby who will go through all of the milestones other babies do. I remember one of our nurses making that comment to me – that after he is born, he will be a baby and to enjoy it. This simple statement has resonated with me ever since. When I heard my unborn child has a chronic diagnosis, that was all I could think about for the longest time and I started to worry about all of the "what ifs." This is very hard to overcome, but it’s possible. My motto is to take each day one at a time and enjoy every moment.

My husband and I are so grateful to have had the opportunity for fetal surgery. We feel we were able to give Owen the best chance of a near-normal life as possible. We were informed that if we had not done the fetal surgery, his chances of walking one day would be very slim. So we continue to look positively into the future and keep the faith each day as he achieves milestones in his own way. There are so many incredible doctors on the maternal-fetal medicine team at Texas Children’s. They kept our morale up and kept us completely informed throughout the process. Now, we continue to be well-guided and highly trust the doctors in each of the specialties Owen needs to manage his condition.