The Day I Found Out

It was a sunny day as Rob, T, and I sang “shake it off” on our way to the doctors for our 20 week anatomy scan. We were excited to see our little one again. We had decided to find out the sex of the baby via the popping of a balloon with strategically placed confetti in a certain color, done by our local party store.

We had been through this before with our first kiddo at the 20 week mark. Making sure the spine, brain, feet, legs, arms, and everything else was developing correctly.

We arrive, get taken back, and the ultrasound tech starts scanning. Letting us know what we were looking at. T was getting restless so I told Rob to take him for some food in the café (and grab me lunch too) and grab the car and pull it around for a quick and easy exit.

The Doctor always needs to come in and talk about what they just saw so I was waiting for that to happen. In between waiting they made me switch ultrasound rooms. I thought it was because something was wrong with the machine in my room but realize now the other machine was better for taking a closer look.

The baby is still pretty low in the pelvis at 20 weeks so the Doctor had to push pretty hard on my stomach to find everything he needed to. It was uncomfortable but I didn’t think much of it.

Something I never thought (or wanted) to hear from someone looking at my baby in utero is “you should call your husband back up here to discuss the ultrasound”. Obviously, I knew at that point he had found something. My mind was racing. I saws that he was trying really hard to look at the baby’s head. I was thinking maybe a brain issue, maybe a spine issue, maybe something about their neck or face.

The Doctor left the room. I text Rob to come back up quickly. I cried but tried to hold it together before I left the room to go into his office. Not really sure why I care so much about crying in front of someone I don’t know after just finding something on the scan that I do not know about yet. It’s a silly thought now. I should’ve just let myself cry. The enormity of the unknown is real and it’s my least favorite place to sit in.

Rob ran up with T and we sat down waiting to hear what the Doctor was about to say. And finally, he let us know that our baby had a cleft lip and possibly a cleft palate. He immediately talked about concerns for other genetic abnormalities that a cleft could be connected to and if we wanted to look further into that then we could. I wasn’t sure what he was alluding to at the time because I felt like all the wind just got knocked out of me.

There were tears. Tears for the idea of the baby I had in my mind. Mourning the thought of having an “average” child that did not have any conditions that I didn’t need to immediately research and find out what the next steps would be.

As we left his office they handed us a card with the baby’s sex hidden inside of it. I had almost forgotten about it. The idea of caring so much about the sex of our baby seemed a bit silly at that moment. Even though now I know, it’s ok for people to be excited about everything when it comes to baby. I can be excited about something and also sad about something at the same time. Emotions are funny like that.

In the car the tears kept coming. I had realized, as soon as the doctor said cleft, that I would not be able to nurse this baby and for me that was heartbreaking. I was not able to nurse T (more on this in a later blog post). I was so excited to try nursing this new little and then that dream crumbled.

And then the googling happened. I know I shouldn’t google things but here we are……I was looking for why this might have occurred. Did I do something wrong? I was not able to take my prenatal vitamin consistently…..was this the reason? I was so scared of what people were going to say. I was not ready to handle anyone saying anything about our baby once they were born. I was afraid I would end up crying or punching someone (or both) if things were said to me. I was afraid I wouldn’t love his face. I was afraid no one would love him. No one would want to hold him. I was afraid of him being taken to the NICU immediately. That he wouldn’t be able to eat. That his brother wouldn’t understand. I was afraid for his surgeries. What did that look like? I was afraid for him socially. Would kids be mean to him? All of the worries…..all of the guilt. It hit me so hard.

The next question we had was, could this be connected to some other sort of genetic abnormality. The doctor said they could do an amniocentesis. This is where they take a long needle and insert it into the uterus to take a bit of amniotic fluid to get a more clear picture of their genes. The doctor said it wouldn’t hurt. Also this doctor was a male so I’m not sure why I believed him. There are concerns for miscarriage but he assured me it is a very small percentage that may have had other factors involved.

Before I had kids I was sure I would never get an amniocentesis. Why would I need one? Knowing wouldn’t change anything for me as far as decisions go. But let’s talk about hypotheticals and then real life. We talked to a genetic counselor and found out some conditions that are connected to clefts and they are devastating. I look back at the Ashley before this moment and then the Ashley after. Real life is not hypothetical and everything changed when I was faced with the reality of what could be.

I decided to go forward with the amnio. I am a planner. I wanted to know if there was anything we needed to plan for. As the procedure was happening it all hit me. The magnitude of everything. The pain of the longest needle ever created. The idea that I could be harming my child. That I could miscarry. The what ifs. It was all too much. I was trying to breath through it while holding back sobs. It was painful and emotional. If I was faced with the same decision again I don’t know if I would do the amnio. But alas life is not hypothetical.

They sent off the sample and we waited.

The same day we found out about the cleft, we went to the party shop, gave them the seal envelope, and asked them to make us a balloon that big brother could pop. We took it home, popped it and the blue confetti flew out of there. Another little boy. I was secretly hoping it would be a boy after the cleft news. Beauty standards are so intense with girls.

The genetic tests came back all clear. This was just a fluke. At 7 weeks gestation (yeah its that early!) his cleft lip and palate were formed.

The more I sat with this news the more I came to terms with everything. I met with our cleft team. Got ready to meet this guy. The day he was born was magical (birth story will happen in future blog post). He was perfect. Beautiful. All ours. Made of pure joy and love and just so, so beautiful. O entered our world and it is so much richer than we could ever have imagined.

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