Something I’d Never Wish Upon Anyone

Posted on Posted in Stories, Trisomy 13 (Patau syndrome)

By Amanda Shoemake

Something I'd Never Wish Upon Anyone
Realizing that all the hopes and dreams you had for your unborn child will never come true and having to make the decision to end your unborn baby’s short life is something I’d never wish upon anyone.

Many couples, especially the women, who terminate their pregnancy due to medical reasons have felt scared and nervous about sharing their loss. Should I say it was a miscarriage? Should I just say that I lost the baby? Or should I tell everyone what really happened? My husband and I are one of those couples, and I am one of those women, and the moment I left the hospital after my surgical abortion, I thought to myself, “What do I tell people?”

It had been very well known on mine and my husband’s Facebook pages that we were expecting. My husband pretty much told all of our friends the day after I took the pregnancy test that we were pregnant, and then we posted an ultrasound picture of our tiny baby at 6 weeks and 5 days immediately after our first OB appointment. But the elation and excitement of posting that first ultrasound picture would change drastically in a matter of weeks.

At that first OB appointment, my nurse practitioner offered a simple blood test to see if I was a genetic carrier for Cystic Fibrosis. This is an optional blood test that my practice offers to all first time expectant mothers. I had no idea what the NP was talking about as she briefly explained that if I turned out to be a carrier, my husband would then have to be tested. I had never even heard of CF before this visit. Honestly, I agreed to the test in the hopes that I would bypass a judgmental look from the NP in the event that I had said no. I always feel like doctors judge you when you go against tests that they offer you. After all, I had told myself from the beginning that no matter what any test or ultrasound showed, I would never terminate our pregnancy.

A week later a nurse called me and told me that my results came back and that I was indeed a carrier of the Delta F508 gene mutation for CF. I had no idea what that meant, but was told that I needed to call a maternal fetal medicine practice in order to have my husband tested. Our maternal fetal medicine appointment wasn’t for another four weeks, so my husband and I tried to forget about the CF thing for the time being.

Then came the day of our appointment, and I had no idea just how much my life was about to change in a matter of hours when I woke up that morning. We arrived at the doctors’ office and ended up speaking with a genetics counselor privately in her office. We went through our family medical history, and our genetics counselor explained to us in great detail how genes work and how being a carrier can increase the odds of passing a genetic disease to your baby and so forth. By the end of the meeting, due to the fact that neither my husband, nor I, knew of anyone on either side of our family who was a carrier of or had CF, we determined there was a 1 in 100 chance that our baby had CF. I thought, “Okay, well that’s pretty good odds.”

My husband’s blood was drawn, and then it was time for an ultrasound. During this appointment I happened to fall in to the 11-13 week range and was offered a first trimester screening for chromosome issues such as Down Syndrome. I thought to myself, “There’s no way my baby has any other issues besides the CF thing.” So the real reason I said yes to the ultrasound screening was just so that we could see our baby again.

My husband and I were so excited to see our little one again. This time the ultrasound machine was much more high tech than the one used in our OB office, and the picture was much clearer. The tech showed us the legs, the arms, the side profile, etc. She couldn’t get a good view of our baby’s face because its hand was either covering it, or the baby would turn away from the ultrasound. About 15 minutes or so into this ultrasound, I knew something was wrong. The tech kept looking really hard and closely at the screen, and she was barely saying anything as she moved and pressed the ultrasound probe against my belly. And to be honest, she wasn’t very friendly after that first 15 minutes. She was all business. She asked if she could do a vaginal ultrasound to get a better picture of the baby.

After the tech left the room so I could get ready for the vaginal ultrasound, I told my husband that this wasn’t a good sign and that I had a very bad feeling. He sat quiet for the rest of the ultrasound, and if you know my husband, he only sits quietly for more than two minutes if something’s wrong. After the tech finished with the ultrasound, she told me the doctor would be in to talk to us. I asked her if everything was okay and she said we would have to wait for the doctor. But after she saw the fear on my face, she mentioned that we should consider more testing such as a CVS. I immediately told her we weren’t ever considering invasive tests because we didn’t want to impose any risk for miscarriage on our baby. She then looked right at me and said, “You need to consider a CVS. There are multiple abnormalities on the ultrasound.” She handed me a box of tissues and walked out of the room. Then I lost it.

Trisomy 13 was the diagnosis from the doctor.

I had briefly read about Trisomy 13 and Trisomy 18 during my obsessive Google searches about pregnancy. I can remember reading about these awful chromosome disorders and thinking “my baby’s never going to have that.” Oh how very wrong I was. It was almost as if I had jinxed it by saying that in my head when I read that article so many weeks ago. We were told only a CVS could confirm the diagnosis. However, after the doctor showed us the ultrasound pictures again and explained that there were severe abnormalities, particularly in the brain, we decided to end our pregnancy at 12 weeks and 1 day without having a CVS done. After our discussions with the doctor, no matter what the CVS ended up telling us, there would be no way our baby would live a normal life due to her brain not developing correctly. Not to mention the doctor didn’t even think the baby would make it to full term. Post termination tests ended up confirming the Trisomy 13 diagnosis.

The emotional trauma that my husband and I went through in a matter of 72 hours from diagnosis to termination was really indescribable. Unless you’re a parent who has been faced with the decision to terminate your pregnancy due to medical reasons, there is no way you will ever be able to understand what my husband and I have been through. I don’t say that meanly or grudgingly, but I say it as a matter of fact. I held and watched my husband as he sobbed uncontrollably in the doctors’ office after we had made our final decision about ending our pregnancy, and in return, my husband held me every night in bed for two straight months as I cried after our termination. Realizing that all the hopes and dreams you had for your unborn child will never come true and having to make the decision to end your unborn baby’s short life is something I’d never wish upon anyone.

And now I’m back to my opening thought, “What do I tell people?” I had some family members advise me not to tell anyone that we chose to end the pregnancy because they didn’t want anyone to judge or cause any more pain for me and my husband. Initially after our termination, I made a post on Facebook saying that my husband and I “lost” our baby due to a severe chromosome abnormality. I gave no more details than that. The post was flooded with comments from friends, new and old, saying how sorry they were and that we were in their thoughts. I even got several private messages from a few old friends saying that they too had experienced miscarriage and that they understood what I was going through. However, in reality they didn’t really understand what I was going through. I didn’t have a miscarriage. I didn’t lose my baby the same way they lost theirs.

I am in no way trying to say that ending a pregnancy electively due to medical reasons is harder or worse than losing a baby through miscarriage. But I’m simply saying that the two situations are very, very different. And maybe that’s why I’ve decided to share our story. Because I want everyone to know that the decision my husband and I made was not made lightly. It was by far the toughest, hardest and most emotional decision we’ve ever made in our lives. I still believe ending a healthy pregnancy is wrong, but because of my own experience I am extremely thankful that I had the right to make the choice I did. I don’t know that I would have emotionally survived giving birth to my baby just to watch her suffer and die only days or perhaps hours later. For anyone who has carried a baby to term knowing what the outcome was going to be, you are stronger than I am, and my heart breaks for you.

My husband and I are slowly coping with the loss of our daughter, Harper Lynn. However our struggles are not over. Two weeks after our termination we found out that my husband, just like me, is a carrier of the Delta F508 gene mutation for Cystic Fibrosis. This means that there is a 25% chance that all of our future children will have the disease. Which now means that a CVS has to be done for every future pregnancy to find out if our baby has the disease. We have had many discussions about what we would do if our next baby has CF, and the answer is the same as it was for Trisomy 13. A life in and out of hospitals with daily breathing treatments and possible lung transplants is not what we want for our child. Our kids should outlive us, not the other way around, and we will always defend our decision.

You never think about genetic diseases or chromosome problems or even infertility when you start trying to have children. Teenagers get pregnant all the time on 16 and Pregnant and Teen Mom. Families like the Duggars from 19 Kids and Counting are popping out babies left and right down there in Arkansas. It’s supposed to be easy, but the reality for some couples is that it’s not easy. It’s hard and difficult and extremely stressful and worrisome if you’re genetic carriers for a disease.

My only request from you if you’ve made it through this ridiculously long post is that next time you read or hear of a couple terminating their pregnancy because of a medical issue, don’t be too quick to judge. The decision is hard and painful for all of us who have been faced with ending a wanted pregnancy and the last thing we need is judgment from others.

 

Image courtesy of Pixabay.