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“I Had No Idea How I Was Going to Tell Him. He Had No Clue”: Dad’s Response to Down Syndrome Daughter Is Totally Beautiful

Shortly after we got married, Brian told me he was really thinking about joining the service. We had always talked about his career path being in some sort of service, but to me, it was just a fantasy. My father was in the Navy until he was medically discharged, so growing up American Pride has always run through my blood. The flag, the anthem, and any service member [have] always sent chills up my spine and tears down my face.

I admired their sacrifice and looked up to their wives, but never had any desires to be one of them. That calling was something I thought I didn’t have in me. That was, until my now husband couldn’t stop talking about feeling pulled in the direction of becoming a soldier. I could see how passionate he was about it, so we took the next steps and got all our information. Then — we found ourselves pregnant. Something we were clearly not planning during our first year of marriage and knowing we would be spending time apart while he attended training. But families all over the world do it, so we continued on.

Courtesy of Hannah Seadschlag

We decided to do the genetic testing to find out the gender before Brian left for training. He would be gone a total of [eight] months. But early on in my pregnancy, I had placenta privea and went into pre-term labor. Bleeding, contractions, dilating. All of it. But they refused to ‘artificially preserve’ my baby’s life because my screening came back possible for Down syndrome. They ended up not being sure if it was a false positive because of my compromised placenta, or if I did, in fact, have a baby with Down syndrome.

Courtesy of Hannah Seadschlag

Bed rest followed until I was about 20ish weeks pregnant. I bled most, if not all, of this time. Brian had left for the next [eight] months at this point. Because of the positive screening, they ran extra tests. My NT ultrasound came back normal, no markers for Down syndrome. My anatomy scan came back normal other than a small focal point. Had I not done the genetic test, they would have dismissed it as a soft marker. To be safe, I was sent to a specialist at USC Hospital. I was first briefed by a very cold and robotic genetic counselor. I was made aware of my options, and repeatedly asked to do further testing to get a concrete diagnosis before it was ‘too late.’ A CVS and an Amnio. I declined. Then I saw the fetal heart specialist. I wish I could remember his name, but I will forever remember his face.

As I laid on that cold hospital bed in that dark ultrasound room, shaking from nerves, he approached my case with absolutely no care in the world. ‘Now, you’re farther along than normal gestation for an amnio, but if you’re worried, we can do an emergency procedure and I can rush your results so you have time…” We had not even done the ultrasound at this point. I declined again. He began the vaginal ultrasound. Now, I can’t read anything on those things, but I immediately knew something was wrong. With my basic knowledge of the human body, I knew both halves of the heart should be very similar in size. Adaline’s were not. One was significantly smaller than the other. As if it was just not going to develop. I instantly started crying.

‘Because we don’t know if your fetus has Trisomy 21, there are a few different reasonings for this heart issue. Now if it is normal, then the heart could possibl[y] develop later on in utero. But if the fetus does have T21 then you’re looking at some major heart issues. If it can even survive a stressful birth with this heart, it would then need to undergo open heart surgery or a transplant. And that’s if you make it to full term. But there’s no way to know for sure without an amnio.’

I didn’t speak much after that. I cried, a lot. My mom held my hand and prayed the whole time. I don’t remember much of what went through my head, other than fear. Fear of losing her before I even got to meet her. Fear of meeting her and not getting a chance to be her mom. Just Fear. And sorrow. Sadness that this perfect living little girl who I had grown so attached to was being talked about as if she was already dead. This was the point where I decided I need to ‘know for sure.’ So out of fear, I consented to an Emergency Amnio.

‘I know you said no to terminating, but no one would blame you. Having kids is hard, having kids with special needs is even harder. It’s going to be all about doctor’s visits, and surgeries…’ I’m sure he went on and on as that long painful needle was pierced through my stomach into the warm, safe home my daughter was living in, but I tuned him out. I just cried and prayed — prayed that her heart would heal, prayed the needle wouldn’t hurt her, prayed I wouldn’t miscarry. Prayed she would get to live. Prayed that something would be wrong with me instead. If it was between her living or me… that it would be her.

It would be about [two] weeks before we would find out the results. ‘My office will call you with the results, unless there are other findings.’ Then that was it. I remember sitting in the passenger seat as my mom drove us home, and I felt numb. She asked me how I felt, and I remember saying something along the lines of ‘I just know she doesn’t have Down syndrome. She’ll be fine.’ I’m not sure if this ‘peace’ I had was my way of dealing with everything I had just heard, or if I was going through the denial part of this healing process.

Those two weeks were the longest, hardest, scariest weeks of my life. Brian and I could only communicate via mail. I wrote out the conversation in my head so many times. When he left, everything was fine. We were ‘in the clear.’ When he left, her heart was fine. She was fine. I was fine.

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