The Story of our Little Guy
I noticed that I shared our "9 Ways to Help" blog post, but I haven't really shared a cohesive story about the WHYYYY behind the need for help. So today, I wanted to share a bit about our journey up to this point!
Let's start back in 2019, when we found out we were expecting twins. All my life, I have been told it would be difficult to have kids at all. Between chemotherapy at a young age and a PCOS diagnosis as a teen, the cards were naturally stacked against me. To find out we were pregnant at all, let alone expecting TWO, was a total miracle. (More on the twins story later).
Kellen and I have always known, maybe since we met, that we wanted to have a big family, and we decided to start trying for another addition to our family after the girls turned a year old. Well, we had our wish granted very quickly and bam, we were pregnant again!
After a first trimester of fatigue and nausea, we went into the second trimester sailing smoothly. My energy was back (as much as it can be while mothering twin toddlers and running two businesses) and I was ready to find out more about our little baby at our 20 week ultrasound.
Due to the pandemic and all the restrictions surrounding that, Kellen wasn't able to attend the last few ultrasounds (my 18 week where we found out we were having a girl, or the 20 week where actually found out it was a boy) but I shared all of the updates with him as soon as I saw him. Well, at my 20 week, the ultrasound tech said things looked good according to the doctor who took a brief look (not my OB but a different one) and sent me on my way. Little did I know that was not the case.
I received a call early the next day from my OB letting me know that there were some abnormalities with the baby's brain and that she wasn't able to comment more on exactly what it was, but that I should expect a call from the high risk maternal fetal medicine team at Valley Medicine. Obviously, this was insanely distressing news to receive over the phone and the 5 days between that call and the appointment date was excruciating. I had SO many anxious thoughts, but my biggest one was "is our baby going to live?". My heart was breaking with each moment that passed that weekend. I could barely sleep, I couldn't stop crying, and my energy levels were so low, I felt like I was dragging around going through the motions.
Our appointment day FINALLY rolled around and after being told Kellen could not attend this appt (like...what???) we decided he should drive me just in case we received extremely devastating news. I was talking to the ultrasound tech about my husband and he said "Is he here? He should be here with you, this is too important, we will sneak him in the back way" and Kellen was able to sit next to me as we found out more about our little guy's condition.
We found out that our baby had a lemon shaped head (his forehead was abnormally shaped) and this indicated fluid on the brain, but we also learned that his spine was open at the bottom, near his tailbone, and this was what confirmed the Spina Bifida diagnosis. There were a LOT of things being thrown at us that day, as we had never known much, if anything, about Spina Bifida, so the unknown was extremely scary. After our ultrasound, we then met with the high-risk maternal fetal medicine doctor, and finally with the genetics counselor. Here were our takeaways:
Essentially, upon early development (like 3rd or 4th week of pregnancy), his spine did not fully close. As though you didn't fully insert the bottom of your zipper into your jacket but were still able to zip most of it up.
This can happen for several reasons, but there are no direct correlations with anything specifically (a nice way of saying "it's not your fault" to the mom who already feels responsible for this happening).
We were told there are three options: 1. terminate the pregnancy 2. monitor the pregnancy and do a repair to the opening after delivering via c-section with a stay at the Seattle Children's NICU 3. Fetal surgery where they would open me up, perform surgery on the baby in utero, then stitch us all back up and monitor the pregnancy from there.
As far as we understood, there can be openings at any point along the spine and wherever that opening begins, everything underneath that opening is affected. Our little guy's was low (L4 vertebrae) so this was a good sign but also still challenging.
For us, option 1 was out of the question. This is our personal belief and experience and we were not going to give up on this little guy without knowing more. Not to say that we outright shut this option down, but this was a devastating choice for us to even have on the table and it led to some really difficult conversations that I had never experienced before.
Option 2 was definitely something we considered, but option 3 seemed like the obvious choice to us if we qualified. Fetal surgery is obviously very risky, and only a few centers around the country specialize in this procedure, but the benefits include things like:
Reversing the hind brain herniation (his brain is sitting at the base of his skull, allowing the fluid the sit in the front and not flow freely throughout the body as it should, meaning he could need a shunt to help drain that fluid at a regulated pace).
Preserving any mobility that he already may have in his lower half of his body
Potentially help decrease the need for a catheter and increase the ability to have bladder and bowel control
By closing up the exposed portion of the spine, this prevents further damage due to amniotic fluid as the pregnancy advances, including the opening bumping up against the uterine wall.
After that first appointment (which I have shared a video on our family Instagram) we left the doctor's office wondering what the hell had just happened. It was life changing and now our goal was to learn as much about spina bifida as we could while also trying to stay away from the dreaded Dr. Google. We found out, as we shared our story, so many people came out of the woodwork to share their own or friend's stories.
In that same time, I was told by a few of my softball teammates that a fellow Husky student athlete and her husband were currently going through the EXACT same thing, so I reached out to her and oh my goodness. While I would never wish this upon anyone, as it is challenging and difficult, we are so lucky to have someone who is guiding us through their journey and giving us the confidence in our choices we are making as well.
Once I got to talking to her, she mentioned fetoscopic surgery, an option that I hadn't been presented, and that the Texas Children's Hospital in Houston pioneered this technique and I was hooked ever since. Long story short, we decided to begin the pursuit of fetoscopic surgery, knowing that moving to Texas was going to uproot our lives, but also wanting to do everything in our power to help our little guy out.
There are strict qualification criteria when applying for something like this. Fetoscopic surgery is still considered a trial (they have performed less than 100 surgeries) and one of the criteria I was most concerned about was the fact that if you have had preterm labor, you are not a candidate. The hard part is, I have only have one pregnancy and they came preterm (at 33 weeks). However, the positive part is, that twin pregnancies tend to deliver early anyway so this is tough criteria, so luckily baby boy and I met all of the other qualifications and we could officially pursue for the fetoscopic surgery. (I will share more about the pre-evaluation process we went through with our short trip to Texas in another post, but for now here is a video).
While I have learned so much and have truly gained soooo much insight, this article is a perfect place for anyone who wants to know more about Myelomeningocele Spina Bifida and more about the fetoscopic surgery.
In the meantime, we are so appreciative of all of the love and support from family, friends, and strangers with big hearts. We are blessed and are excited to head down this path and just can't wait to share our little guy with with world! Thank you for following along and hopefully this is helpful and informative!
Ps. Our little guy is already so cute and precious, here are some sweet photos of his little face and profile:
I mean come on, that little nose and those cute lips (and yeah, it's a little alien-like, but they come out pretty precious).