How it all started…
On May 28th, at approximately 9:30am, our world flipped completely upside down. Our OBGYN walked into our exam room after our ultrasound. She looked at me and said, “I have to just come out and say this.” Everything after that happened in slow motion.
She began telling us it looked like our son, Noah, had spina bifida and some fluid on his brain, also known as hydrocephalus. She said all this with tears in her eyes. I was inconsolable. My husband didn’t know how to react. Being the incredible human and doctor she is, she told us to stay put until she could get in touch with our local maternal-fetal medicine doctor. I’m not sure what kinds of strings she had to pull, but we were in his office about an hour later.
You see, we thought we were just going to the office for our 20-week anatomy scan. We had already done the genetic testing, so we assumed we would just be counting fingers and toes. Man…our assumptions were wrong. You don’t ever expect your baby to have a birth defect until you hear those unfortunate words pass across your doctor’s lips. We received a spina bifida diagnosis that day.
The MFM did another in-depth ultrasound. I feel like it took days to get this scan done. After we had finished, we went into a little room where he graciously walked us through Noah’s condition in specifics. We talked through many options, but he is not a Spina Bifida expert, so we were going to be referred to specialists 4 hours away.
Processing it all…
Honestly, the entire day was a blur. There’s really no other way to describe it. I don’t know that I’ve ever cried so much in one day in my entire life. It was just hard. We were prepared for a normal day, not a spina bifida diagnosis.
After processing the initial emotion of it all, I was able to dive into the research. I needed to fully educate myself on my sons’ condition and what his future might entail. I needed to know all the options available.
I started researching fetal surgery and clinical trials. I began exploring every option possible. Even though we had done the more in-depth scan with our MFM, we still didn’t know the specifics of my son’s prognosis. That would come later. The next month moved at warp speed, but time had almost stopped at the same time.
My husband and I have made many decisions over the past several weeks, but all we can do is hope that we are doing what is best for our sweet baby boy. We can pray that we are making the right decisions and going down the right path.
When you receive a diagnosis like this, it’s almost impossible to process, but you have to move forward. As mamas, our babies need us in the most impossible situations. We dig deep to find the strength to do what we have to do. Somehow, I had to find the strength to explain how our world was changing to our toddler.
Grief
Ever since we received the news, we have been grieving for our boy. Luckily, most kids with spina bifida have a very optimistic prognosis, which is definitely the case with our son. We are so hopeful for our future, and we know that he will absolutely amaze us! Still, we are grieving the loss of our “normal” pregnancy. We are grieving for the future that we had already built in our minds for our boy. Grief is a natural part of the process.
If you are going through a similar experience, here are a couple of resources that I found extremely helpful for coping with a spina bifida diagnosis:
- Spina Bifida Parenting Facebook Group
- Considering Fetal Surgery for Spina Bifida Facebook Group
- Spina Bifida Association
Support the Ronald McDonald House Charities in Cincinnati (where we stayed during our prenatal care) by purchasing the We Fight Together Cotton Tee!