What Nobody Tells You

Posted on Posted in Hypoplastic Left Heart Syndrome, Trisomy 13 (Patau syndrome)

By Gina McGarey

Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly.

I didn’t want kids until I was in my 30s. This past summer we started trying. Fast forward about 4 months and we found out I was pregnant. We were both super excited and planned all of these different ways to tell our parents, siblings, and friends (I have some amazing videos of us telling most of them). This would be the first grandchild for all of our parents and the first great-grandchild for half of our grandparents. My mother-in-law believed she would die before she had grandchildren. Needless to say, everybody was beyond excited.

At my first doctor’s appointment, the nurse asked me about genetic testing. My husband and I didn’t have any risk factors and, like any first-time pregnant woman who didn’t understand what was being asked of me, I figured we didn’t need testing. The baby had a strong heartbeat. Everything was going perfectly: too well in retrospect. (If you know me, perfect and medical things don’t mix.)

My first ultrasound—where we were to find out our baby’s sex—was around 19 weeks.  The ultrasound took about an hour, which I thought was strange. The technician seemed abnormally quiet to me. She had trouble seeing all of the things she needed to see. She didn’t even tell us it was a boy; she typed it on the ultrasound and we had to read it.

I had the feeling something was wrong but I shrugged it off. After getting pictures we went into a room to wait for the doctor to come talk to us. I spent that half hour looking at information about breastfeeding and we talked about who we would call first and tell. Everybody was waiting for the news of what we were having.

The doctor walked and said there were abnormalities visible on the ultrasound. They couldn’t see everything because the baby wouldn’t move much, but the anomalies involved the heart and brain. They wanted us to visit a specialist.

We had to call our parents and tell them this news. It was heartbreaking and horrible to relive over and over again. I could barely get the words out.

What followed was a long, emotionally intense 8 days until we saw a specialist at one of the best medical facilities in the country. After another ultrasound, the doctor gave us what seemed like encouraging news: although the heart problems were severe (underdeveloped left valve, insufficient blood flow, a hole between the left and right valve, and narrow ventricles) they thought these issues could be monitored and repaired. The brain anomaly was potentially a cyst which could go away on its own. We were scheduled to see a fetal cardiologist in another 8 days to look more closely at the heart.

They also talked to me about amniocentesis, which I wanted to do even though we’d have to pay for it out of pocket. I wanted to know if there were additional problems. We also discussed with the genetic counselor (who was amazing) what to expect from the amnio and more about the heart condition.

The amnio was not nearly as bad as I expected. We felt much better leaving that appointment. Again we contacted our families and close friends to explain what had been discovered.

Another 8 long days later, as I was getting ready for our appointment with the fetal cardiologist, our genetic counselor called with the amnio result. It had come back with a diagnosis of something called Mosaic Trisomy 13. Mosaic means that it only affects some of the cells in the baby (mosaicism is rare, about 1 in 20,000) but the results showed that a majority of his cells were affected, resulting in the heart and brain anomalies. Babies don’t usually make it to birth with this diagnosis. Those who do typically have profound physical and developmental problems. Many survive only a few hours.

My husband and I researched Trisomy 13 and were horrified. Not knowing how to comprehend this information, I went into the shower and sobbed.

We talked with our genetic counselor about the results and our options. We were told that, due to his heart and brain problems, the chances of our baby making it to birth were less than 5%. One of our options was to continue the pregnancy and see what happens. From what we read, babies who go full term with this face excruciating medical problems and usually die. They could do surgery on his heart in utero but there was no guarantee he would survive even with that risky intervention.

Our other option was to terminate the pregnancy. At this point, I was already more than halfway through my pregnancy (21 weeks). Michigan has strict abortion laws. I only had until 24 weeks to end the pregnancy. Not only was there a timeline but my two termination options (D&E or L&D) would narrow to one (L&D) if he grew too big.

Getting heartbreaking news like this is terrible enough, but then we had to quickly make this decision. Luckily, my husband and I had discussed our options when we first found out there were problems and we might be facing a situation like this. But we never seriously thought we would actually be here. I couldn’t bear continuing with the pregnancy, having people touch my belly and having to explain that he wasn’t going to survive. Even at that point in time, I wouldn’t have known if he was alive or not. I also couldn’t endure the thought of giving birth, holding him, and then having to let him go. Emotionally, that was too much for me. On top of all of that, neither of us wanted to put an innocent child through the things that a child born with this condition would face knowing he would die anyway. We believed letting him go would be a selfless and humane thing to do.

It was a long, stressful, and emotional 6 days before I could get the procedure done (Feb. 14th, 2017). I spent every moment wondering if he was still alive. I knew we made the right decision but that didn’t make it any easier to let him go. I don’t know if I ever really felt him move. There was only one time during my pregnancy that I thought I might have.

The procedure was brutal, extremely painful and nothing anybody would want to go through more than once. We spent about 14 hours over two days back and forth to the hospital.

Nobody tells you that going through this will force you to consider things that nobody ever thinks about nor would want to discuss with their spouse: the different termination procedures, what they entail, and how intensive they are. Whether you’re going to name your child, and do you want footprints or handprints if that’s possible. Or what to do with your baby’s remains, etc. It’s difficult on top of already being crazy hormonal and heartbroken.

The icing on the cake was that my insurance wouldn’t cover it. It was going to cost us at least $15,000 – $20,000 for the procedure plus the $400 for additional genetic testing to see if either of us were carriers of the transmutation for T-13. (We found out we are not). The insurance would have covered the $200,000+ expense for in utero heart surgeries and all of the follow-ups if we were attempting to keep him alive. But it wouldn’t cover our choice to spare him all of that.

It’s really fucked up to force people facing this decision and having no reasonable choice to then come up with the money to pay for it. We could have had it done at a clinic at a lower the cost but we didn’t want to do that. We were comfortable with the doctors we had. We would figure out how to pay for it.

My insurance did end up covering all of it after all. I paid a grand total of $120 and still can’t believe it.

I’d been on birth control from age 16 to 31, until we started trying to get pregnant. I never thought I’d have to terminate a pregnancy, especially one that I wanted.

I have a lot family and friends who are super supportive of our decision, which is very comforting and helpful. I was surprised when members of my family who are extremely conservative said they’d do the same thing if they were in my position. Knowing that there was less judgment and more understanding takes away the fear of sharing my story.

I believe that the decision about whether my little boy lived or died was already determined for me. He wasn’t going to live. The decision about whether he would die sooner rather than later was up to us. The decision and procedure were not something I wanted to do; they were something I had to do.

The post-termination pathology confirmed the Mosaic Trisomy 13 diagnosis and hypoplastic left heart syndrome. His heart was half the weight it should have been at 22 weeks gestation.

Once it was over I still had to deal with all the normal post-partum issues but without the joy of having the baby. I dealt with bodily issues for months after my procedure. This was a constant reminder of our loss. When I was pregnant it felt strange and uncomfortable since I had never been pregnant before, but now that I’m no longer pregnant wish I still was. Even though I couldn’t eat certain foods, or drink much caffeine, and my pants wouldn’t fit, I wish I was dealing with those minor irritations and that he was here.

People don’t talk about the bad; they only talk about the good. Nobody tells you when you’re trying to get pregnant that things can go wrong and it could end badly. It’s not a fun experience or an easy decision no matter how you get there. It doesn’t feel good. It stays with you. People judging you for it doesn’t help.

A watercolor I had made of my ultrasound as a positive keepsake to have in my home. I found it on Etsy through a woman in England and I absolutely love it.

Every day is a struggle. Some days are easier than others. I’m lucky to have an extremely large family base and a group of friends who have supported me throughout this ordeal. My husband is wonderful. I couldn’t have gotten through this without him.

I now volunteer at the hospital where my specialist was and where I had my procedure done. I’m going to counsel other women going through the same situation, share my story at conferences, and work with doctors and nurses in training to give them a patient’s perspective. I’ve also been in touch with somebody at the Center for Reproductive Rights and am willing to work with them to share my story and help make sure that parents have the options they need in a similar situation. This ordeal has given me a drive and a meaning, which is also helping me to heal and move forward.

 

CC0 Public Domain Image (top) “The Secret” courtesy of Kristina Flour via Unsplash

Watercolor art was commissioned by the author and used with permission.