Emerson's story: When life gives you lemons

When life gives you lemons, make lemonade. I imagine nearly everyone has heard this old saying before. In other words, find the positive in a negative situation. In our case, we’ve been doing our best to “make lemonade” ever since finding out our daughter, Emerson Grace, has spina bifida – a rare birth defect in which the baby’s spine and spinal cord fail to develop properly. It’s a bit ironic that the first sign of spina bifida, noticed by our physician through ultrasound, was the shape of her brain. It was shaped just like a lemon – a classic finding among babies with spina bifida.

Images courtesy of Natalie Gaudin

I can remember this time vividly. In September 2013, after several years of trying to conceive our second child and consulting a fertility specialist, we were ecstatic to learn we were pregnant with twins. Twins! Unfortunately, our elation was short-lived. During our first high-level ultrasound, we learned one of the babies looked to have complications. The other baby looked great, though, or so we thought. In our follow-up visit two weeks later, we learned via ultrasound the twin with complications did not survive. This was heartbreaking, but we were preparing ourselves for the worst, so the loss wasn’t a complete shock. However, what we learned next was.

Although I was heartbroken, I knew we still had another baby with a strong heartbeat. I was truly thankful for that. While the ultrasound continued, I started to sense something was “off.” Our physician was intently looking at the screen, his brow furrowed. I prayed for my gut instinct to be wrong. I told myself he was probably just being extra thorough. However, after a few more minutes, he looked at us and shook his head. “I’m sorry. I think baby B has spina bifida.”

What? Spina bifida? I wondered to myself how this could be true as he began reviewing images of her brain with us. “Lemon sign … banana sign … both classic indicators of spina bifida,” he told us. I asked him what this meant for our daughter. I can remember the words spinning through my head as we left the office: paralysis, inability to walk, bowel and bladder problems, brain damage and poor quality of life. We were completely devastated. I felt like a thousand bricks had fallen on top of my chest. I could hardly breathe. I asked my husband through tears, “Why us?” A week later, we received an official diagnosis of myelomeningocele, or open neural tube defect (NTD) – the worst form of spina bifida.

Once I had a good, hard cry and some time for the shock to wear off, I immediately turned to the internet to learn everything I could about spina bifida – the good, the bad and the ugly. I prepared myself for the worst, but what I actually learned (primarily through personal blogs and Facebook groups specific to spina bifida) was that children with this diagnosis were thriving, smiling and leading positive lives. Yes, there would be challenges, but my thinking started to shift to: “Why not us?” We could do this!

After further research, I stumbled upon a website that would change the course of my pregnancy, our lives and the life of our unborn baby girl. The site was dedicated to fetal surgery for spina bifida repair. I learned of an extremely limited number of hospitals across the nation (at the time) performing this surgery in-utero to repair the spinal defect before the babies were even born. I stayed up all night reading about this surgical procedure, outcomes and risks. We were fortunate enough to have one of these hospitals right in our backyard at Texas Children’s Hospital. My fear and devastation turned into hope and optimism. This was a game changer for us!

I immediately reached out to Texas Children’s Fetal Center the next day and spoke to one of their nurse coordinators, Angel. She answered all of my initial questions and, after discussing our case with the fetal team, scheduled a consultation and evaluation to see if we would qualify for fetal surgery. It was an intense process, including lots of diagnostic testing (a fetal MRI, fetal echocardiogram, several ultrasounds) and meetings with numerous specialists from maternal-fetal medicine, pediatric surgery, neurosurgery and neonatology – just to name a few. 

The team from Texas Children’s Fetal Center was incredible. Our coordinators, Angel and Jayme, walked my husband and I through each step of the process with empathy and care. Our medical team, Dr. Michael Belfort, Dr. Alireza Shamshirsaz and Dr. William Whitehead, were honest and open with us regarding the risks and benefits of fetal surgery. They wanted to make sure we made an informed decision that was best for our family. Then, we waited … to hear if we were good candidates for fetal surgery. I knew in my heart that if we were, I would jump at the chance to have the surgery – without a doubt.

Eventually, the call came. We were candidates for the surgery!

On the day after Christmas in 2013, Emerson and I underwent surgery; I was 22 weeks pregnant. The team took great care of me before, during and after the procedure. My physicians were extremely attentive to my recovery and monitored Emerson’s progress closely. One of the greatest benefits of fetal surgery for spina bifida is the opportunity to correct malformations in the brain when the spinal cord is tugged down. This can help prevent the need for shunt placement after birth. A few weeks after the surgery, our neurosurgeon could already see improvements in Emerson’s brain structures. To this day, she has not needed a shunt.

After surgery, I remained on bed rest for the remainder of the pregnancy. I would have weekly check-ups at Texas Children’s Pavilion for Women to continue monitoring Emerson’s progress and my healing. I always looked forward to our ultrasounds so I could see how active she was. It was amazing to see her little legs kick each time! Our little girl decided to make a grand entrance via emergency C-section on the morning of April 1, 2014. It just seemed fitting for her to decide to arrive on April Fools’ Day!

Looking back nearly five years, I have no doubt that pursuing fetal surgery at Texas Children’s was the absolute best choice for Emerson and our family. It was all worth it, despite how scary it was at the time. Today, Emerson is a rambunctious 4-year-old who loves to run, jump and play! She’s smart, sociable and loving, with a hint of sass, of course! Oh, and guess what her favorite drink is? You probably guessed right – lemonade!

Related:

[watch:] Texas Children's Fetal Center Spina Bifida Educational Video (YouTube)

[read:] Fetoscopic Repair of Spina Bifida