"There’s a problem, and it’s a big one.” The words haunt me two and half years after the doctor uttered them. The memory is etched in my mind and I wish that I could let it go. I wish that I could forget.
I had been filled with nervous anticipation all day because we were going to find out the gender of our third baby. It was supposed to be a routine ultrasound appointment. I remember every detail of that crisp October afternoon that turned out to be anything but routine.
I recall the perinatologist’s upbeat demeanor when he came into the room as he made small talk about our impending arrival and our other two children. He asked if we wanted to find out the gender of our baby. With a smile I said yes and added that I didn’t care whether it was a boy or a girl, I just wanted a healthy baby. Wade laughed when I said that because he knew that I wanted another girl. I had always wanted three little girls.
I remember the exact moment when the doctor’s mood and expression changed as he was scanning my swollen belly with the ultrasound wand looking first at my baby’s head and then slowly and carefully down the spine and I knew something was wrong. I became more certain as he pressed on my stomach harder and harder and looked at the screen with a furrowed brow…silent.
I had stopped looking at my baby and began to fixate on his face as he studied the image on the screen. He stared at the images of our baby for what seemed like an eternity in awkward silence.
After a while he mumbled something about checking some numbers and left the room. Apparently he needed to gather his thoughts before he talked to us about our baby. We were alone and terrified starring at the blurry black and white image of our baby frozen on the monitor, wondering what could possibly be wrong.
When the doctor came back into the room he began telling us what was “wrong” with our baby. He had determined that our baby had a neural tube defect, specifically spina bifida.
He started showing us all of the signs on the ultrasound such as the lemon sign, which is where the fetal skull of babies with spina bifida early in pregnancy appears to be shaped like a lemon. He showed us that he could detect an Arnold Chiari malformation of the brain apparent by our baby’s banana shaped cerebellum which is also present in babies with spina bifida. He could see mild hydrocephalus and finally, as he moved down the spine he showed us the open defect that could clearly be seen on ultrasound.
Next, he showed us that the other organs appeared to be normal and asked, “Do you still want to know the sex?” I shook my head yes, as I felt tears burn my cheeks and he quietly uttered, “it’s a girl.”
As I sat up and pulled my pink sweater down over my round belly and wiped away tears the doctor turned the on lights and left us alone to let it sink in.
When he returned he started telling us that we had some decisions to make and we didn’t have much time because I was in the eighteenth week of my pregnancy. He told us that our baby girl’s lesion was quite large and he expected that she was going to have significant impairments and would probably need multiple surgeries. He felt that the size and location of her lesion indicated that she would have significant paralysis and limited leg function. He said to expect that she would probably have to use a wheelchair and never have bowel or bladder function.
Then he told us that we should decide if we wanted to terminate the pregnancy. I began to shake my head and say “no” before he finished his sentence, but he was sure that I needed to consider this so he continued to tell me about my option to terminate my daughter’s life. He told me that many parents make this difficult choice to spare their children a lifetime of disability, pain and surgeries.
Then he said that if we decided to proceed with the pregnancy for “religious reasons” we needed to discuss what our next steps should be for the remainder of the pregnancy. He told us not to make a decision that afternoon, but to think about it over the weekend and call him on Monday.
He told us that doctors don’t know exactly what causes spina bifida and I shouldn’t blame myself. I didn’t find that comforting. If he didn’t know what caused it, how could he know that I was not to blame?
He gave us some information to read about in utero-surgery for spina bifida, which he said he didn’t recommend, and we left his office. I got to my car and realized that he didn’t even give us any sonogram pictures. I walked out of the doctors office, through the hospital corridors and out to the parking lot as if nothing unusual had happened to me. I got into my car sunk down into the seat and began to sob uncontrollably. In that moment, I knew what heartbroken meant. That is what I felt, broken…I felt utter despair.
I was devastated. I was angry. I was terrified but, I was also determined… I was going to become an expert on spina bifida and I was going to search for the best doctors in Dallas to “fix” my baby girl. That is how I spent the next twenty weeks and beyond devastated, angry, terrified and determined…
I can’t believe that it has been two and half years since this journey began for us. On that day we became part of an elite group of people known as “the parents of a child with special needs.” It would be months before I fully realized the responsibility of holding that title. I wear it now like a badge of honor and I love to meet other members of this select group. I bond with them because we have a mutual respect and understanding that other parents can’t begin to comprehend.
I never expected to have a child with special needs, but I have never questioned it either. I know that God does not make mistakes. I trust that he knew exactly what he was doing when he chose us to be Julia’s parents and I am so honored to have the privilege to be her mom.
However, unlike what the doctor assumed, I did not choose life over abortion for religious reasons. I chose Julia because from the moment the home pregnancy test spelled out the word “pregnant,” I was no longer the mother of two; I was the mother of three. I already loved her with all of my heart. She was my baby girl. She was my gift and I did not care what kind of package she was going to come wrapped in.
I read that I was supposed to be in denial at first. I was never in denial. I skipped that stage, I guess. I was angry. I wasn’t angry that my baby had a birth defect. I was angry that the doctor had the audacity to ask me to terminate her life before she got to live it. I know that it was his job to present me with the option. I just didn’t like the way he presented it. He made me feel like I was making the wrong choice. He made it seem like abortion was the best solution to an unfortunate situation.
I really struggled with my decision because of his words. I knew abortion was not an option for me, but not because I am pro-life or because I am a good Christian girl. It was simple. I loved my baby. I could feel her moving. I had listened to her heart beat. I never thought of her as a “fetus.” She was my daughter. But, I struggled with feelings of guilt. Was I being selfish? Was she going to suffer? Was she going to have an unhappy life of pain and surgeries?
I was also scared. I was terrified because I knew that my baby was going to need surgery to save her life the day after she was born. I read everything I could get my hands on about spina bifida and I knew about all of the associated conditions and complications.
I spent most of my time researching and learning so that I would be prepared when she was born. We met with doctors at the spina bifida clinic at Scottish Rite Hospital, as well as, the Neurosurgeon who would operate on her when she was born. I talked to physical therapists that had experience working with children with spina bifida and I joined a spina bifida mom’s group. I ordered books from Amazon and devoured every word. I was armed with a lot of information. I knew the best and worst case scenarios. I prayed for the best and prepared for the worst.
It made me crazy when people tried to make me feel better by saying “everything will be okay” or “it could be so much worse.” Not just crazy, actually I felt utter rage. How the hell did they know? My newborn baby was going to need brain and spinal surgery. Nothing about that was okay with me and right then I took no solace in the fact that there were worse things in the world. The only thing that made me feel better was learning and preparing for Julia’s birth. I felt like our family members should have taken the initiative to learn about spina bifida also. Unfortunately, most of them didn’t.
The rest of my pregnancy was pretty normal except I had ultrasounds more often. Luckily, I saw a different perinatologist for the remainder of my pregnancy and he had a much better bed side manner. He was always very positive during our appointments, showing us positive signs such as, how well Julia was moving her legs and he never forgot to give me the sonogram photos!
I also had to change obstetricians so that I could deliver at the same hospital where Julia would have her initial surgery to close her back. I wasn’t thrilled to change doctor mid-pregnancy, but my new doctor was fantastic.
By the time delivery day was around the corner, I felt confident that we had the best doctors and we knew all that we needed to know to care for our baby. I was sure we could handle this challenge because we had armed ourselves with information, we had the love and support of a big extended family, and we were emotionally and spiritually ready.
And then she was born…Literally kicking and screaming. The moment I saw her I was free from the feelings of guilt and selfishness that had burdened me for twenty weeks. He was so wrong about her. She was strong. She was beautiful. She was perfect. She was loud!
1 Samuel 1:27
"I prayed for this child,
and the LORD has granted me what I asked of him."
