Prenatal Diagnosis of Down Syndrome- Jett's Story

Every woman finds out about the diagnosis in one of two ways, either during pregnancy screens, or at birth. Adrienne found out via a Prenatal Diagnosis of Down Syndrome, meet her and her beautiful Jett.

I found out I was pregnant in March 2016, we were sooooo excited! The completion of our blended family was on the way. I was 39 and I’m a nurse so I knew my risk factors.

Everything was going smooth and my general OB sent me to high-risk just “to be safe”. I’d had 3 other babies that were full term huge babies so I felt it was just a necessary precaution because I was “advanced maternal age” (which I HATE THAT TERM).

So we went to the appt, saw the genetic counselor who seemed cold and quite matter of fact. Then it was off to the US room, I was 22 weeks 2 days. My husband was sitting in the chair and we were oohing and aaahing over our bugs on the screen. The US tech was measuring away and I was none the wiser. Then that question “have you done any prenatal screening blood tests?” I looked her dead in the eye and immediately knew what she was talking about.

In comes the OB who was rather unfriendly and hurried. She lays it all out there ” your baby has a thick nuccal fold, what looks to be a few heart defects, short femurs and no bone in his pinky”.

Just like that, what was such a happy day became one of the darkest days I had.

The next 15 minutes were a blur as an amino was done, and I left with a bandaid on my belly and a 48 hour agonizing wait for my FISH results. In my heart I already knew, my baby had DS.

I got the call from the genetic counselor 2 days later while at work. I was not nice to her at all, she delivered the news I already knew. I left work and drove home to my husband and sobbed for 2 days. I was 22 weeks 4 days. I was so angry and sad. Sad that the baby I had imagined was no longer going to exist. My fears were; EVERYTHING!!

I may be a seasoned nurse, but I knew nothing about Trisomy 21 and what was going to be my new “normal”. My initial fears were his health. I had to wait 3 weeks for his fetal echo, which wasn’t as bad as initially thought. Every ultrasound was nerve-wracking, what was she going to find today? My strong boy was killing it in the womb!!!! He was growing and measuring right on time! We even have a picture of him raising his fist like “look at me Mommy, I’m strong”!!

Every US that passed I began to feel more at ease with my baby and his health. I just needed to know that when he was born he was going to be ok.

We elected to not tell anyone except immediate family. Honestly, I couldn’t deal with the immediate “I’m sorry” response. I didn’t know how to respond to that without waterworks that I couldn’t control or stop. It was just easier for me to keep it to myself. A little part of me felt robbed by a prenatal diagnosis it just put a damper on being able to enjoy my last pregnancy.

The other part of me, the Nurse part, needed to know everything….so that I could process and cope. I’m not gonna lie, I researched “false positive amniocentesis results” until I was purple. There is no arguing with science, but I tried.

My husband, wow, he handled this like a champ. He held me, comforted me and all the while kept telling me how awesome Jett was going to be. To say that he handled it better than I is the understatement of the century. He told his parents with a smile on his face and was proud, while I was still sobbing in the car. He was the one who told me daily that it was going to be ok. Our parents were both incredibly supportive.

This pregnancy, despite my advanced age, (insert eye roll) was a breeze! I felt good, honestly this was my easiest pregnancy. I was induced at 39 weeks 5 days which was my choice, I’ve never gone into labor on my own.

He was my easiest delivery. I got pitocin started at 7am and Jett Joseph Michael arrived at 10:14pm weighing 7lb 14oz and was 21 inches long.

HE WAS PERFECT!!!!!

It was in that moment that I held Jett to my chest and he looked at me, was when I knew it was all going to be ok. Jett got his echo at 18 hours old and that’s when he was taken to the NICU. He had pulmonary hypertension, ASD, VSD, patent foramen ovale and a patent ductus arteriosis. He needed high flow oxygen to help reverse his pulmonary hypertension. I knew he was going to be ok, but the Nurse in me knew there was a slew of things that could go wrong.

Jetty spent 7 days in the NICU and got to come home on December 22. The best Christmas present I have ever gotten! His siblings were obsessed with him!

My husband made a Facebook post after Jett was born telling the social media world about our diagnosis and how we would like people to think of him. It was amazing to get support from everyone and a huge relief that our “secret” was public knowledge. I was not ashamed of the DS diagnosis but I struggled with the awkward conversation that occurred after I told someone. I wouldn’t change the way we did things, it worked for us.

It’s funny, everyone that came to see Jett would say “I don’t think he looks like he has DS”. I would just smile and say, but his chromosome do!

I had only known one other person had that a child with DS. Ironically she used to babysit me when I was a kid. I reached out to her when I found out and she gave me the single most important piece of advice I ever received.

She said: ” love that baby like you loved your others, he’s just a baby”.

She told me to enjoy every second and to NEVER compare him to other babies DS or neurotypical, that it will rob you of the here and now. THAT WAS SPOT ON!!! She also told me to read the poem Welcome to Holland. I still can’t read that without crying, because I have such an awesome tour guide!!