Getting My Daughter's Diagnosis Was a Whirlwind of Emotions


 I’ve been thinking a lot lately about the day we found out about my daughter’s diagnosis. The day we got the spina bifida (SB) and hydrocephalus diagnosis was probably the most emotional day in our entire lives for my husband and me.

As I started to connect with a few others just starting their diagnosis journey (varying diagnoses at varying stages, not just SB and not just during pregnancy), I realized the emotions you go through are sort of “universal.” I believe it is important to be totally open and honest about all the emotions, so other parents know they are not alone. It can be such a lonely journey initially, but it doesn’t have to be.

I also think it is important to tell you this post is not meant to make you feel bad — or make you feel good, really. This is just what it is: our diagnosis story. I believe anyone’s diagnosis story is just as important as the birth story.

Our Diagnosis Story:

We went in for the gender check at 16 weeks, a day after our wedding anniversary. They pulled up the screen and told us it was a girl. My husband and I were excited and surprised (we really thought it was going to be a boy).

Then the sonographer said she needed to check on something and came back in and told us about “the banana” she had found: the shape of the cerebellum at the back of the brain. Our doctor came in and said our baby girl had spina bifida and hydrocephalus. We both started crying and the doctor asked, “Do you know what that means?” We both said, “No,” and we nervously laughed at the silliness of our tears, since we had no idea what we were crying over. We didn’t know what it was, but we knew that it was something big or they wouldn’t be talking to us like this. Our Dr. is amazing and so compassionate, but did need to have the conversation about whether or not we wanted to continue with the pregnancy. He informed us a high percentage of people who receive this diagnosis terminate the pregnancy. We had a few weeks to decide but we needed to make a decision about what we wanted to do.

The next thing we knew, we were being ushered into a genetic counselor’s office a few rooms down in our doctor’s office (we had the benefit of already being at a high-risk obstetrician office purely by coincidence). She explained what spina bifida and hydrocephalus meant. That our baby’s spinal cord was exposed outside her back and we had no way of knowing the extent of the nerve damage. The hydrocephalus meant she had severe fluid on her brain and we again did not know the cognitive impact that could have. She explained the risks of bringing the baby into the world. She again reiterated we had a choice to make about the pregnancy.

As we are trying to process all of this, I was also worried about something else. I had just started a brand new job the month before, so I had to call my brand new boss, all while sobbing into the phone, to tell her I wasn’t able to return back to work. She knew, as did the rest of my team, we were going for a gender check. When she heard me crying she told me to take all the time I needed — I will never forget that moment and the support my new boss provided.

After speaking with the genetic counselor, my husband and I went to the parking lot. I sat in the driver’s seat, with my feet touching the parking lot asphalt, and he crouched down on the ground at my feet, bracing his back against the car door. We both just sat, shocked, holding hands and crying.

As the day progressed, shock grew to several other emotions and thoughts:

Why did we have to be going through this?

Why did everyone get to have a healthy baby?

Why isn’t our baby healthy?

This isn’t freaking fair! (But I didn’t use “freaking”).

What did I do wrong?

How will her life be affected?

What are we going to do?

As vivid as the first portion was, the rest of the day is a blur. We went to church at some point and sat there in the pews and cried. We cried a lot. We worried. We were angry but also sad and excited at the same time.

We went home that day and decided to start reaching out to specialist in our area who could tell us more about SB and hydrocephalus. We educated ourselves as much as physically possible starting on day one. That was the first day of our journey.

So then what happened?

Did we go right from that to where we are today? Was it an overnight switch? From angry and hurt parents to advocates of SB and hydrocephalus and positive (most of the time) supporters? Heck no!

I am going to say something that is widely unpopular to share — but I also think it is so important because I know I am not the only person who has felt this way. But reader beware, it is not going to make you feel warm and fuzzy.

I watched all my friends (and “online friends”) get pregnant with healthy baby girls and boys and it hurt. It hurt so badly. I watched celebrities and strangers and people obviously not taking care of themselves have healthy babies. I read stories of healthy babies being put up for adoption or being abandoned. All of it made me angry.

Not angry like, “I hope you get a sick baby,” Absolutely not. But anger out of jealousy. Why us? Why did our child have to go through this? Why did our sweet baby have to be put through a life like this? Why is their child healthy? I believe no one wants their child to have to overcome hurtles from birth — no one.

It never meant I didn’t want to hear about your babies or see your pictures, please know that, it just hurt. That’s all. It hurt. (Actually, seeing your pictures did make me smile — even though they hurt. I know, confusing huh? Imagine being in my head).

This pain lasted pretty much my entire pregnancy. As we gathered more and more information on SB, our excitement built and our fear (sort of) subsided. But it was a very, very, very slow process.

Baby Girl’s Birthday.

Then came our baby’s birthday. On the day our daughter was born, our diagnosis story ended and our parenting journey began. Starting with the first second of hearing our baby girl’s cry and meeting her (something I wasn’t sure I would even be able to do on her birthday), our feelings of anger and hurt slowly melted away. She was perfect, SB and all! After meeting her we pretty much instantly began the process of healing. Our immediate and immense love for her overpowered everything, except fear. The fear was still there, just lessened.

In sharing this, I hope you or someone you know can find peace in the fact that these struggles are not unique to spina bifida or any other diagnosis. I have heard this from people who have tethered cord diagnoses, had miscarriages, not been able to get pregnant, and so many more paths on the journey to parenthood. Sharing our journey in life allows us to connect and not be alone.

As we always say: Be Happy. Laugh. Enjoy Chaos.

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