Okay, okay. First, I will admit that I am no expert in coping strategies when your life is turned upside down, and I’m not one to give advice on coping with change. I’m not even sure that I’m actually coping most of the time. But our lives were recently changed forever; see my last post, and we are quickly learning to navigate.
What happened after diagnosis?
After our son was diagnosed with spina bifida, we started weighing our options to proceed with our pregnancy. For us, it came down to 2 options: surgery in utero to correct his defect or postnatal surgery.
Our son has the most serious form of spina bifida, myelomeningocele, or “open spina bifida.” We decided, to give him the best possible outcome, we would assume the risks of fetal surgery, where they operate in utero. This is an incredible procedure, and luckily for us, the specialists we were referred to are involved in pioneering the fetoscopic MMC (myelomeningocele) repair, meaning they use small fetoscopes to fix the baby in utero instead of fully opening up the uterus. After many consults and much deliberation, we felt comfortable moving forward with this procedure.
Unfortunately, the fetal center that would be doing the repair is about 4 hours from where we live. There is an extremely high risk of preterm labor with this procedure, so we were actually required to relocate to even be eligible to have the surgery. To do what we needed to do for our baby boy, we now had to change our lives and temporarily move, coping with change and uprooting our family.
The changes all happened so fast.
Keep in mind that we originally got our diagnosis at 20 weeks, and surgery took place at 23 weeks and 6 days. Basically, we had less than a month to make all these decisions and turn our world upside down. We strongly believe that this would give Noah the best possible outcome, so we have been willing to do whatever it takes. But that still doesn’t mean it’s been easy coping with change.
As I said before, this is an incredible surgery for babies diagnosed with spina bifida. See, spina bifida itself doesn’t actually damage their little spine. It just leaves their spine open to the elements, aka amniotic fluid. Over time, the exposure of the spine to the amniotic fluid begins to damage the nerves, and therefore babies lose function, and that loss of function correlates to the level of their lesion on their spine. A common complication with spina bifida is Arnold Chiara malformation, where the brain stem is pulled down into the neck. Babies with spina bifida also commonly experience hydrocephalus, which is a buildup of cerebral spinal fluid in the brain’s ventricles. Fetal surgery helps preserve function, but it can also help reverse the Chiari malformation and stabilize hydrocephalus.
Pretty incredible, right? Incredible as it may be, it doesn’t come without risks. I mentioned earlier the risk of prematurity. Less than 20% of babies with this repair make it past 37 weeks. That’s a pretty scary statistic in itself, but it’s also risky for the mom. It’s basically an unnecessary surgery for the mom to benefit the baby. There are risks of blood transfusion, infection, complications of future pregnancy, etc., etc. Personally, I didn’t hear any of the risks to me, but my husband will tell you a different story from his perspective. He was the one worried about me, and I was just worried about our baby.
How we’re coping with change.
Long story short, I’ve had the surgery, and I’m recovering well. Even though it was the most painful and terrifying thing I’ve ever done in my life, I’d do it again in a heartbeat. We have relocated, and we are starting to get in the groove as a family. Luckily my husband and toddler can travel back home a few days a week to have some “normal” time.
As for me, I’m stuck, and it sucks. I’m not working due to bedrest orders until delivery, and I don’t have any friends or family where I’m at. I’m limited on activity, and I miss my dog. My life doesn’t even resemble anything of what it was a few months ago, and it’s hard.
I’m coping with change, but I’m not sure if I’m doing it well. I’m trying to keep myself busy the best I can. Writing just happens to be a very positive outlet for me, so expect to keep hearing more! I’m also in therapy. I use BetterHelp, where I have almost 24/7 access to therapists for a monthly fee. I have regular appointments for my physical health, so I’m staying on top of that. I make it a point to have a conversation with a friend every day, even if it’s just over text. It’s super easy to want to close off during a time like this, but being open and transparent is honestly the most healing I can recommend.
Disclaimer: I am not a medical professional. Nothing in this article is intended to provide medical advice or make any claims. I am solely speaking from my own personal experience and the decisions we made.
