A Letter of Support

Posted on Posted in Opinion, Trisomy 18 (Edward's syndrome), Trisomy 21 (Down syndrome)

By H. B.

A Letter of Support
I cannot say what my decision might have been had I had a prenatal diagnosis. Quite likely I would not have continued the pregnancy.

I found this site through a link on a forum, in a discussion on the reasons for ending a pregnancy late-term. I read through many of the stories here, and commend the women for having the strength to share their experiences with others forced into making painful decisions.

I am the mother of three, and my middle child has Trisomy 21 (Down syndrome). I love and cherish her. She is beautiful and high functioning. But I cannot say what my decision might have been had I had a prenatal diagnosis. Quite likely I would not have continued the pregnancy. While she is fortunately very healthy, she has a life full of challenges ahead, the magnitude of which are becoming more and more apparent as she gets older. She turns 10 ten tomorrow.

What drew me to your stories most though were the challenges of my third pregnancy.We were fortunate to have a healthy son, but I was faced with the choice and would have ended that pregnancy had the outcome of our prenatal tests been different.

After our daughter with Down syndrome was born, my husband and I discussed the genetic reoccurance risks involved with having another child. They seemed pretty minimal. At worst, our risk of having another child with Trisomy 21 was 1:100. As high as it sounded compared to the risk for a woman my age (I was 23 when I had my daughter, and 26 when I was pregnant with my son) it still came out to a 99% chance that everything would be fine. I planned to have a CVS, but the perinatologist took a look at the type of trisomy my daughter has… a very rare translocation with only a piece of the extra #21 chromosome present… and decided that the chances of my having a child with Down syndrome was the same as the rest of the population—no increased risk. We were ecstatic.

Then at 18 weeks we had the ultrasound. With our other two children we didn’t find out the sex, but this time I let the sonographer hazard a guess. It seemed pretty clear there were boy parts. There was a catch though… there might be lesions on the brain. I was told this was a fairly common ultrasound finding—choroid plexus cysts—and could be absolutely nothing. But since I’d had child with a genetic disorder already they were concern it might be Trisomy 18, also called Edwards Syndrome. I was immediately scheduled for a level 2 ultrasound.

I scoured the internet for information. I came into my level 2 ultrasound probably knowing almost as much about Trisomy 18 as the perinatologist. When the sonographer was sure about the presence of the cysts, the OB was brought in, and he stayed overtime to perform my amnio right then.

I knew I wanted an amnio this time. My husband and I had already agreed that we would end this pregnancy if the amnio results came back positive for Trisomy 18. We needed to find out ahead the 22-week deadline for termination of pregnancy in our state.

For two weeks we awaited the amnio results. I could feel my son moving. I’d already named him. Yet I knew we might very well have to carry out our choice to end the pregnancy depending on the test results. I could not bring a chld into the world with little to no chance of survival. I could not put my living children through the ordeal of meeting a brother who would never awaken to a meaningful existence, and mourn his death. I couldn’t put them or myself through this, nor could I justify to myself the pain he might feel in his twilight existence hooked to machines.

My thoughts are with these families who share their stories here. I commend the administrators of this site for providing a safe place for people to come in their time of need, to read the stories of others, to know that it’s normal to mourn, and to understand that they are not alone.

 

 

 

photo credit: via photopin (license)