Skeletal DysplasiaStories

Dads Hurt Too – Talk About It

Dads hurt too; talk about it

I didn’t know how to talk about it. I kept reminding myself that I needed to be the rock of this family and lead by example to get my wife and I back to normal. I thought that if I told my wife how truly crappy I felt, it would only bring her down more and make things worse.

By A.K.

It never crossed my mind as a possibility that my wife and I were not going to have this baby. We did everything right. We downloaded the apps, watched the foods we ate, had regular doctor visits, exercised regularly (but not too much), did all of the genetic screenings, even refrained from letting the news spread until we crossed the first-trimester milestone where miscarriage rates are higher.

We had just started trying for our first baby so were surprised to see the positive pregnancy test after returning from a fun vacation. To our delight, my best friend and his wife found out they were also pregnant only about a week apart. We passed every test and checkup we had passed with flying colors. We shouted the news from the rooftops, spammed my coworkers’ emails, pulled the trigger on finally buying a house, and were a few weeks away from our elaborately planned baby shower.

An unexpected diagnosis

Everything was great until our anatomy scan at 22 weeks. At this point, ultrasounds had become routine so we found ourselves joking with the technician, “Woo! He has 2 arms!” I remember both of us giving each other a look like “Wow, this technician is giving us nothing… how rude.” She excused herself from the room saying she saw something she wanted the doctor to look at. We thought nothing of it.

The doctor started her examination and began reciting (what seemed like) a two-hundred-line-item laundry list of what was wrong with our baby. “Hole in the heart, underdeveloped lungs, missing femur, ambiguous genitalia, missing clavicle…It is my professional opinion that this baby has a severe case of Skeletal Dysplasia.”

I looked over to see my wife’s soul get sucked from her body and wrenched with tears. The rest of that visit was mostly a blur to me, but an instinct kicked in along the lines of “Be the man and take care of your wife. You can think about your feelings later.” This turned out to be a recurring fallacy in my psyche that I wished never got sparked in that room.

We both knew the severity of the observations in our baby. After the deepest of dives in internet research, we both knew this baby would likely not survive in life. I started calling around town to various doctors, hospitals, and clinics to plan for every outcome. Luckily, we live in a city with a specialist in this diagnosis. After spending about three hours with her, we came to the conclusion that this baby was likely not to survive labor. But if he did, he would have been doomed to a life of pain and suffering. We agreed that we couldn’t continue this pregnancy.

The next few days were some of the most physically and emotionally exhausting we’ve ever experienced. Supporting the immediate physical health of my wife became my only focus.

The emotional and social aftermath

Although we were both torn up inside, my own emotional pain started spiraling a few weeks after the procedure. It felt like every interaction I had with someone required me to make an excuse for what happened. I felt so incredibly embarrassed that I’d told all of my friends and coworkers how excited I was for this baby and now I had nothing to show for it. In my mind, I had this same conversation with roughly one million people:

THEM: Are you getting excited to have the baby?!
ME: Actually we lost the baby.
THEM: *awkward pause because they have no idea what to do*

They felt terrible, I felt worse, and there was no recovery from that bomb dropper in a conversation. This reoccurrence chipped away at my being. I didn’t know how to talk about it. I kept reminding myself that I needed to be the rock of this family and lead by example to get my wife and I back to normal. I thought that if I told my wife how truly crappy I felt, it would only bring her down more and make things worse. This was one of the biggest mistakes of my life, as it had the opposite effect. I found myself alienating my wife’s feelings and portraying that it was wrong for her to continue grieving. This further degraded our already low day-to-day spirits and most importantly started to affect our loving relationship. Shitty feeling to realize this.

I finally start to talk about it

I started by seeking out some male-focused support forums and materials online and quickly realized that I’d been approaching our recovery in the worst way possible. I’ve never been one to freely share negative feelings so it is a continuous exercise to get better at it. However, I found that being transparent about everything allowed us to be on the same level and helped each other get to a better place. This was extremely challenging for me to overcome, yet it was critical to allow us to come out on the other side.

There was certainly no “magic bullet” or answer to what we went through. It has been tough as hell! Yet going through this has made it a bit easier to get through the next challenges to come: physical recovery, starting the process of trying to get pregnant again, not getting pregnant the first at-bats, meeting with fertility specialists, recognizing and celebrating my best friend’s childbirth, continuing to field inquiries from coworkers, etc. I wish more men pro-actively talked to me about this. I wish more people, in general, talked about this. I wish I never had to write this.

But we are getting there. My wife is now 29 weeks pregnant with a baby girl. In all honesty, it has been difficult for me to get excited about this pregnancy. I wake up every day reminded of how my previous excitement set me up for so much heartbreak. However, I keep reminding myself that there will always be risks out there and reasons to reserve excitement, so I am trying my best to stay positive. I know I’ll never “get over” what happened, but I’m now in a place where I feel like we will be ok. And at the end of the day, I owe it to my wife and future daughter to make this life happy.

Be vocal. Ask for help. Talk about it. And lean on people. It will make a difference.

 

Photo by Andrew Neel on Unsplash