Our Spina Bifida Journey

It’s been barely a month since we found out that something could potentially be different with our third sweet babe. In such a short amount of time, so much has happened already. I’ve decided to periodically share our journey here so that we can always remember all we have been through and so that our baby girl can one day look back on her incredible beginning.

When we first got the call that one of my maternal blood test numbers came back slightly elevated, I honestly wasn’t overly concerned. At one point during Ella’s pregnancy we were told her kidneys were not fully developed. We were also told that Cole would be abnormally large. I was semi-used to these shocks during pregnancy, on top of not having the easiest pregnancies in general. The seriousness started to set in when we were referred to a Maternal Fetal Medicine specialist (high risk OB) for our 20 week anatomy scan, rather than seeing our normal OB.

We settled ourselves by remaining excited for the ultrasound and the chance to find out if we’d be adding another girl or boy. We also tried our hardest to stay off Google! Thus, at our appointment a few days later, we knew nothing about signs to look for during the ultrasound. We were blissful seeing our baby and learning we’d have another daughter! The sonographer did a great job to not worry us and our nurse even told us how shocked she was that we had been referred since my bloodwork was only so slightly elevated. When the OB came in, we were still convinced we would be having a healthy baby. And then she said it – “We do see spina bifida in the baby.” It was like a freight train came crashing into us.

At first I was able to listen to her diagnosis and ask questions. “How did this happen?” “We have no family history of this.” “What will this mean?” She explained that it happens very early on (day 28 of pregnancy to be exact) and that no amount of coffee, or alcohol, or anything else would have caused it. There was nothing I could have done to prevent it, it just happened. And then I lost it. She told me it was completely normal to feel that way, but it did not feel normal. It was a grief I’ve never experienced.

The diagnosis was Mylomeningocele (MMC) at the L3 level. Basically, a portion of our daughter’s spine had failed to close and her spinal cord was protruding outside of her body. It’s the most severe type of spina bifida. She gave us some paperwork and good websites to do our research on (instead of going down the awful and terrifying Google rabbit hole), and also referred us to the Maternal Fetal Medicine specialists at Children’s Hospital Colorado – a place we’ve since come to know as the mecca for all things high risk pregnancy and beyond.

Here’s where I’d like to take a quick break and say just how insanely thankful I am for the extreme advantage we have experienced in living in Colorado and meeting the doctors that we have. After learning of our diagnosis, I joined a few facebook groups for parents of children with spina bifida. I’ve always liked having a community around me and gaining all the information I possibly can. In these groups I learned that the vast majority of parents are given severely incorrect information when they receive their diagnosis. They are told their children will be completely paralyzed, have no cognitive function, or will not survive – all without ever seeing a specialist. This leads to over 60% of spina bifida pregnancies being terminated. Every case is of course 100% different, but we are eternally thankful for the knowledgeable doctors we have had the pleasure of meeting and the very timely manner in which we were referred to one specialist after another. Not to mention the fact that they have all been in our own backyard and we have not had to travel to meet them like many families make the sacrifice of doing.

In the following days, we read everything on the Colorado Children’s website regarding our diagnosis and unfortunately also got sucked into a few terrifying Google searches. My husband and I went through a rollercoaster of emotions, both breaking down at different times. We grieved the challenges our unborn daughter will have to face, the ways it will change our other two children’s lives, and the overall feelings of uncertainty and unfairness. I, especially, have wrestled with God during this time like I never have before. The amount of “why us” moments and the lack of trust I had, especially at the beginning, have humbled me to my core.

There are two treatment options for repairing a neural tube defect like this – fetal surgery or postnatal surgery. Since the fetal surgery option is time sensitive in that it needs to be done before 25 weeks pregnant, we were thankful to be able to meet with the Children’s Hospital team only four days later. It was an intense 8 hour day filled with many firsts for me. An MRI, ultrasound, fetal echocardiogram, and a ‘family meeting’ with doctors, nurses, and social workers. While we received amazing information and images about the specifics of our daughter’s diagnosis, we were also met with the cold hard truth and worst case prognosis scenarios. We were told to expect she would never walk, never use the restroom without assistance, and would likely need a shunt in her brain for hydrocephalus, among other issues. Spina bifida is referred to as a “snowflake condition,” meaning that every case is totally different no matter what the original diagnosis may be. While we had already read about these issues (and cried over them) it was still a shock to hear them said out loud. We were also introduced a bit more to the idea of fetal surgery; and while very scary, it also gave us some hope that there may be a way to help our girl before she is even born.

We scheduled our second family meeting for the following week and tried our best to go about our usual business in the meantime. At the second meeting, we met with each specialist individually. The social worker made sure we were doing ok and had support in place. The fetal surgeon went over every detail of the surgery with us including the MOMs trial, which is the first study to review the findings and benefits of treating MMC with fetal surgery. (Keep in mind this is still basically considered an experimental treatment and we were only around the 90th patient to receive this surgery at Children’s Colorado.) The biggest benefits are; drastically reducing the need for a brain shunt, reversing the effects of hindbrain herniation, and potentially increasing leg function. Lastly, the neonatal surgeon talked to us in depth about the risks of having a premature baby at every stage of prematurity. The biggest risk in having fetal surgery is delivering prematurely (on average, fetal surgery MMC mom’s deliver at 34 weeks due to preterm labor), and so this talk was obviously terrifying. Overall, we knew it was a big risk but could also come with big rewards for our baby. And so we were preliminarily scheduled for surgery.

We began talking to our employers, friends, and family about what was going on and the drastic detour our lives were about to undertake. Not only would I be having major abdominal surgery in less than two weeks, but I would also be on modified bedrest for the duration of my pregnancy. Again – high risk, high reward. Amazingly, and almost shockingly at times, our community showed up to support us in so many ways. Friends and family listened to me cry, took our kids during appointments and gave us time to reflect, and our employers were absolutely understanding and accommodating. We are blessed to the highest extreme in these areas and so very thankful for every text message, gesture, and investment.

In the final week before surgery we spent time tying up loose ends at work, having a few more doctors appointments, spending as much time as a family as possible, and of course, putting up our Christmas decorations. And then the day was here. On November 10th, we checked in to Children’s Hospital Colorado for mine and my daughter’s first ever surgery. Looking back on it, that morning was incredibly surreal. It started out with a last minute ultrasound in which baby girl was quite literally waving to us and melting our hearts! I then walked hand in hand with Connor into the operating room. I go into the operating room for work every day, but having surgery myself and being put under was a wild ride. The insanely talented surgeons (three of them to be exact!) opened up my abdomen with an extended C-section incision, followed by two more incisions through my abdominals and uterus. Then they partially delivered our baby’s behind and closed her spinal defect before placing her back safely inside my uterus all in about four hours time. Absolutely crazy! I’ve seen kiddos in these circumstances referred to as “twice born,” which I think is pretty dang cool.

The few days following the surgery were a blur of exhaustion, pain, and extreme sadness missing Ella and Cole. Baby girl did amazing and since I was responding well with no contractions or complications, we were discharged on the morning of our fourth post-op day. I have never been more thankful for my home and my family! (My mother is an actual angel by the way.) The recovery once home was, and still is, slow going. An ever growing baby inside an abdomen with multiple incision points is its own beast. Plus, the fear of going into labor too early with every cramp, twinge of pain, or deep breath is scary every minute of every day.

BUT!!! Yesterday we had our two week post surgery checkup and it’s a day we’ve been looking forward to since we got that first call. Baby girl and I had a follow up MRI and an ultrasound, followed by another family meeting (I just love that they call the meetings that). On ultrasound, everything is progressing as well as we could hope for with me. No signs of labor so far and healing is right on track. On MRI, baby girl’s hindbrain herniation is completely reversed, her ventricle sizes are holding steady (which means no concern for a brain shunt at this time), and her closure is looking perfect. While we won’t have any other specifics surrounding her leg function or any other challenges she may face until she is physically here, we could not have asked for better news or a better outcome so far!! For now, we continue modified bed rest, relaxing, and trying to stay pregnant as long as possible – a scheduled 37 week C-section is the ultimate goal!

While we still have a long, long way to go (12 weeks to be exact, hopefully!) and many hurdles to overcome, we feel that we have so much to be thankful for this Thanksgiving.

  • The amazing doctors that have gotten us this far.
  • The friends that have checked in on us at every step and supported us with love, food, and happiness.
  • The family that made this possible and continues to be our number one supporters and shoulders to cry on.
  • The jobs that have been so very understanding and loving towards us.
  • The ability to give our daughter the best chance for a fulfilling and normal life and to be able love her no matter what lies ahead.
  • The chance to take our kids along on this journey and teach them compassion and care for others.
  • The chance to lean into God in a way I never have before.
  • Lastly, and most importantly, I am forever thankful for my amazing husband and the father of this precious girl. He has been the anchor to reality and hope for me this past month and continues to be the most amazing caretaker and handler of all the things I have ever seen. I adore him beyond words and I know this precious baby girl will too.

I wish you all a very blessed Thanksgiving with family this year. I hope you take a minute to realize the most important things in life and appreciate every second.

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