Out of every 2,000 births, one birth will result in spina bifida. One in two thousand. Those are the odds that it could be me.
When we discussed trying again for another baby, defects never crossed my mind. Why would they? I had already gotten my miscarriage “out of the way” and then followed it up with a very healthy baby boy. I completed all the optional trimester screenings and always had fantastic results. With this pregnancy, why would it be any different?
In fact, it wasn’t different. Everything was going smoothly. I felt “better” the first 15 weeks than I did with Lincoln – I was mostly nauseous with vomiting here and there. With Lincoln, it was multiple times a day, every day, for 16 weeks. Something in my gut told me it was a girl – based solely on the fact that it was all so different. I completed all my screenings. First trimester at 12 weeks for Downs Syndrome – came back negative. Then again at 18 weeks for Spina Bifida and other defects. I got the phone call about three days later from the nurse letting me know my results came back negative, my screenings were normal – in fact VERY normal was the term used. She had an optimism in her voice, I’ll never forget that. It was as though she was thinking, “I just love delivering good news!” But to be honest, I KNEW my results would come back negative. I have a normal baby at home. I do normal things. I remember hanging up with a smile on my face and a “got that off my list” demeanor. I was ready for my 20 week anatomy scan and thrilled for our gender reveal.
Spina Bifida blood testing is only 80% accurate – leaving 20% for a false reading. False negatives are extremely rare, especially with blood work. In fact, when completing my hours of research I was only able to come across ONE case of someone sharing a false negative story.
If I become very honest here, I always knew something was wrong. I couldn’t put my finger on it and it was far more of a worry than just hoping there was a heartbeat. I knew that something just wasn’t right. There was honestly no reason to think this – except that my gut was telling me so.
Friday, December 15th
The day of our 20 week anatomy scan I was overly nervous and anxious. I felt sick to my stomach. Darius told me I was this way with Lincoln and I smiled and nodded, but I knew it was different. The screening started out great, everything was normal and the weight of anxiety was beginning to lift. And then, there it was. “That must be her tailbone” I thought to myself. And right as I went to ask, to confirm my thoughts, the ultrasound technician says, “I want to recommend you see Maternal Fetal Medicine. See this bump right here? This is a fluid filled sac, often associated with spina bifida.”
At first thought, “I knew it.” Not that I knew it was spina bifida – but that my gut was correct. Next thought, “get me out of here!” I wanted to run. Third thought, “Get this baby out of me!” I wanted it over with. Lastly, “What the hell is spina bifida?! It must not be THAT bad because she surely doesn’t seem to be too worried.” Darius proceeded with a lot of questions, most of which I can’t remember, but I do remember the tech playing it real cool, keeping the calm. She told us it may just be a cyst. “A cyst?! I can totally deal with that!”
But then, she continued to spend a lot of time focusing on the brain – not saying anything, which really bothered me. We had this tech with Lincoln and she was always so honest, except with Lincoln there weren’t any problems. About an hour later she finishes up, prints our photos, places the gender photo in the envelope, and says she’s going to go meet with Linda… the nurse practitioner.
At this point, there weren’t any tears. Darius and I were holding hands and just staring off wondering WTF just happened. Did she seriously just walk out like none of this news was something bad? We meet with Linda who blatantly, and rudely informs us that YES our baby has spina bifida, YES she has fluid in her brain and she does not know how we will sleep over the weekend but they already have an appointment for us with Maternal Fetal Medicine on Monday at 2… oh, and to “have a blast” at our gender reveal the next day. That entire encounter lasted around 3 minutes.
ENJOY OUR DAY TOMORROW!? Is she KIDDING?! I wanted to RUN from my life, from my body, from this baby. I wanted OUT! We went from hearing a cyst, to then spina bifida, to then fluid buildup in her brain!
Doctors and scientists believe, although uncertain, the leading cause of spina bifida is lack of folic acid. I do not understand why doctors do not recommend that ALL women be taking a prenatal months before conception because they SHOULD. If I had known this, maybe we wouldn’t be in this situation.
As I try to always remain honest, this part I’m about to say may disappoint, sicken, or shock people. But you aren’t in my shoes and you don’t have a right to tell me how to feel.
I wanted to terminate. We wanted to terminate. We thought our child was going to be born a vegetable. For Darius and I, that is not a life we would want our child to live. What kind of life is that and how would that be fair to Lincoln? I did not want to become best friends with nurses and doctors. I did not want to drown in debt from medical bills. I know there are so many different opinions on termination and what fulfilled life looks like for a child, and I respect those who disagree with me. In fact, I was always against termination … until a situation like ours presented itself. It forced me to see all sides and really analyze the situation closely. So again, while I continue to respect the decisions of others, I hope our thoughts and decisions can continue to be respected.
60% of parents who find out their child will be born with spina bifida terminate. Which is one of the leading reasons why there is not yet a cure. Because there are hardly any patients to help find a cure. Sixty percent.
Saturday, December 16th
Our gender reveal. We decided to continue with the gender reveal party in hopes it would give us something to look forward to. Honestly, it was anything but. Darius and I were sad and not really present. We tried hard to put on smiles but all we could think about is whats wrong with the baby and if we were going to even keep it. Through my research on spina bifida the night before I had learned that it is more common in girls. So, when that puff of powder showed up as pink, I was ecstatic to have the girl I had always wanted but also devastated because it just proved more that it was, most likely, spina bifida.
Monday, December 18th
Our meeting with the doctors at maternal fetal medicine (MFM) was nothing like we had hoped. We spent the whole weekend crying, researching, praying and searching for any positive outcome or story. Unfortunately, we didn’t get much positive news from the internet. The ultrasound tech and doctor were able to confirm that yes, the baby did in fact have spina bifida. It was the worst case, myelomeningocele (milo-my-ninja-seal), but also the most common. Worse news came – the nerves were exposed and not covered by skin, leaving them open to more damage from the amniotic fluid and bumping up against the uterus. After a two hour ultrasound, we met with a genetic counselor who gave us options and introduced us to fetal surgery. We agreed that we wanted to take steps to fix the problem before considering termination. The next day I went back to MFM for an amniocentesis, where they stick a long, skinny needle through my stomach into my uterus to draw out amniotic fluid. They would test this fluid to make sure the baby didn’t have any additional chromosomal defects.
Over the next week-
After the amnio, we were sent to Johns Hopkins a couple days later where we had a four hour appointment, including yet another ultrasound to confirm the same findings. They were able to tell us more specifically where on the baby’s back the lesion started and ended. We discussed what this meant for her leg movement, bowel and bladder control and brain function. We met with the neurosurgeon who discussed what surgery would look like for myself and the baby.
Spina Bifida effects a baby in two drastic ways. One, the spinal cord is not finished so this has effects on walking, leg numbness, bowel and bladder control, hip movement and more. But the worst part is its effect on the brain. Because the nerves are exposed, they are tugging down on the rest of the spine which is connected to the brain. The cerebellum is then pulled down into the neck, or spine, causing fluid in the brain to buildup because it has no where to go. Typically, patients who do not undergo fetal surgery will be in surgery hours after birth not only to repair their spine but to receive a shunt in the brain which allows the fluid to move freely. Shunts cause lots of problems over a lifetime and are the leading cause to death in spina bifida patients. They clog, get infected, break, fall out of place and often need repair, which means multiple brain surgeries.
The fetal surgery through Johns Hopkins is new, and yet to be FDA approved. This surgery is done laparoscopically which means I will receive a c-section, and tiny instruments will be used to make holes in my uterus and correct the baby open spine. By performing this surgery, the cerebellum should naturally return to its place allowing fluid to move freely. This surgery will increase her chances of walking independently from 40% to 80% and reduce the chance of her needing a shunt drastically. If for some reason during surgery they are not able to do what they need laparoscopically, they will remove the baby from the uterus to perform surgery on her back that way. In the spina bifida world, this is known as being twice born.
In the past 2.5 weeks we have seen countless doctors and I have been stuck with more needles than I’d like to in my lifetime. And more is to come. We are aware that no matter what, when the baby is born she will be spending time in the NICU. We are aware that her life will be different, and so will ours. But, we now feel hopeful… and a little bit of excitement. Although our current focus is on having a successful, “easy” surgery, we are looking forward to adding a little girl to our family. We have had the best family and friends lift us up in support and prayer. We have had time to grieve the “normal” baby that we had thought we would have and learn to love the new normal. We have found an enormous strength in our marriage and bond with one another. We have found a whole new meaning to unconditional love.
In the next couple weeks (and through the remainder of my pregnancy), we will be spending a ton of time at Johns Hopkins. I will be going back to many meetings with my doctors, the NICU and the anesthesia team. I will be receiving steroid shots to help her lungs mature faster in case they need to deliver. And on January 10th, baby girl and I will undergo a surgery that could improve her life in such a dramatic way. We ask for prayers, support and if you have questions please ask. We don’t need pity or sympathy as we have already moved past that and are now seeking positive thoughts only. 🙂
So, why am I sharing? Because I love to blog, and I love to be open and honest. I have been very closed off about this for the past few weeks but I also understand that as time moves on eventually people will find out. Whether its in May when she’s born or for whatever other reason. I want people to know her story, our story, and for anyone else out there currently in the grieving phase to know there is hope, there are options and your child will NOT be a vegetable. In fact, typically, there is nothing wrong with the intellect of children born with spina bifida. Their lives will be different and more challenging without a doubt, but with supportive families and an amazing team of doctors I feel assured there is NOTHING they won’t be able to do.