Carrying the Weight of a Second Trimester Termination for Medical Reasons (An Open Letter to your so- called "Pro-Life" friends)

Subject: Carrying the Weight of a Second Trimester Termination for Medical Reasons (An Open Letter to your so- called "Pro-Life" friends)
From: A Heartbroken Genetic Disease Carrier
Date: 2 Nov 2016

Carrying the Weight of a Second Trimester Termination for Medical Reasons
(An Open Letter to your so- called "Pro-Life" friends)

I'm sharing my story in light of recent politicized discussions about late term abortions and consequently the social media frenzy that followed. I simply can no longer sit back and watch women and families be ridiculed and vilified for making the choice to terminate a pregnancy, especially after going through the most heartbreaking loss they will ever face. If you think this story can reach anyone on this issue – please read and share.

A few days before New Years Eve last year, I was ecstatic to see the pregnancy test was positive. I couldn't wait to show my husband as soon as he walked through the door. We were overjoyed and filled with the hopes and dreams of any new potential parents, but with caution. You see, a few months prior in a routine genetics screening, we found out that we were both carriers of an extremely rare genetic disease. The odds of being a carrier for this disease was 1 in 50,000. Life threw a curve ball at us big time, and we were trying to come to terms with our next steps.

(If you aren't familiar with genetics, here's how it goes- If both partners in a couple are carriers of a genetic disease then there is a 25% chance for each pregnancy to be affected. So couples who are carriers have the potential to face this each time they want to have a child. There are some other options available such as In Vitro Fertilization with Pre Genetic Diagnosis of embryos -which takes many months, has a relatively small percentage success rate and since most insurances don't cover genetic testing it can cost upwards of $15- 20,000. Some couples even take out loans and financing for this- and some couples just can't afford it. We decided to take our chances naturally before exploring these options, as the odds were in our favor. We had no idea what kind of journey we were about to embark on.)

The earliest possible diagnostic testing for genetic diseases can be done at 11 weeks pregnant, provided there is enough placental fluid. Couples who seek this testing are doing so for much wanted pregnancies. There are very grave genetic diseases that can only be detected at this time. It takes about 1-2 weeks to get results for the basic chromosomal disorders (Down's Syndrome, Fragile X, etc) . After that if you are looking for specific genetic diseases then you would have to wait longer because some samples may need for time for cultures to develop enough to be tested.

In our case it took a month. A WHOLE MONTH -bringing me to just barely 17 weeks pregnant and in the second trimester. I was not informed until the day of testing that it would take this long. For the entire month I cried nearly every day preparing for the worst and hoping for the best. Our stress level was through the roof and I could not longer function at the most basic level. The worst part is, aside from our parents and closest friends, no one had any idea what we were going through. All genetic disease carrying couples go through this- with different diseases ranging in prevalence and severity such as Spinal Muscular Atrophy (SMA), Sickle cell Anemia- and the list goes on and on. Sometimes conditions and complications are discovered due to random circumstance as well, or even at later anatomy scans. These things can happen - and chances are it's happened to someone you know.

When we got the call my heart stopped. I vaguely remember hearing the words “I'm sorry- I know this isn't the result you were hoping for...”, I practically fell to the ground in shock. I was walking from our laundromat back to our apartment. My husband ran to meet me and nearly had to carry me home. I didn't leave the couch for a week. Every commercial made us cry. Do you have any idea how many cute baby commercials there are? It was unreal- we had to constantly change the channel.

We tried to come to terms with the facts – our baby has this disease. It would start at some point very early in life. It is degenerative. There is no cure. It is fatal. They would start to lose motor and respiratory functioning, eventually dying of heart failure at a young age. Our child would suffer. There would be nothing we could do to help them, or prevent this from happening. My husband and I discussed all of our options, as this baby wasn't only mine, it was ours. Together as a couple we made the decision that we did not want want to bring a child into the world for them suffer and eventually die if we could prevent it. We chose to terminate the pregnancy. This was the most painful decision and experience of our lives.

Now imagine how it must feel to have what happened to us be put on display by politicians as a political tool. Imagine how it feels to have them graphically and inaccurately describe someone's most painful and traumatic experience. Imagine how it feels to have so called “friends” post offensive and judgmental articles about our personal heartbreak and loss. NO. Just, NO. This needs to stop. The political distortion of reproductive rights has got to end. This is a real civil rights issue. By passing restrictive abortion laws you are making things just that much harder for families with similar situations, and sometimes with very serious medical consequences which can be fatal for both baby and the mother. People need to stop treating this like it's only a WOMEN'S issue. This is also a FAMILY issue- the men in our lives included, and I encourage the male partners of any couple going through this to speak out as well. This can affect anyone who wants to start a family. ANYONE. Even YOU.

If you are lucky enough to go through a healthy pregnancy, then that's great for you. But please don't sit at home with your perfect, beautiful children and tell others that you think they should watch their child suffer. Please don't take the high road and say “ I'm pro-life personally, because I could never choose an abortion” as a disclaimer. You literally have no idea what you would do unless you were faced with the situation. Believe me, I never thought I would and many families I have connected with over this issue would have said the same. But when confronted with the real fact that their child would be incompatible with life and would most likely never leave the hospital- their view starts to change. I hope you are never faced with this. I wouldn't wish it on my worst enemy. But if you are, then you can do what's right for your family, but I think you should at least have a choice. Just remember this: we love our baby just as much as you love yours.

This is the place where compassion, humanity, and advances in medical technology cross paths. This is the place where there is an uncomfortable silence; where nobody wants to be. If I can reach just ONE person and make them understand what a very serious civil rights issue this is, it's worth sharing my story. If I can make JUST ONE person change their viewpoint, my job is done. We never thought this would happen to us. No one ever does. Please I share this story to those who may be willing to open their hearts with empathy to those have been faced with this devastating decision.
A Heartbroken Genetic Disease Carrier