IPL Story - Founding member of The IPL Collaborative, Stacy McDonald, PhD

“Unfortunately, your test came back positive…for Trisomy 18.” Those are words that you never want to hear from a genetic counselor following a free-cell fetal DNA test.  I was 36 years old and 15 weeks pregnant at the time I received that phone call.  As my mind was reeling, I listened as the genetic counselor explained that most babies diagnosed with Trisomy 18 don’t survive pregnancy. 

Of those who make it full-term, half are stillbirth, and of the babies who make it to a live birth—approximately 95% die before their first birthday due to serious health issues.  I felt like someone had knocked the wind out of me.  I’ve never felt emotional pain like that before.  I had to run upstairs and somehow maintain my composure, as our 4- and 6-year old daughters were home with me at the time.  They didn’t know that I was pregnant.  We were cautious about sharing our good news with family and friends this time around.  I don’t
have a logical explanation for this, but for some reason, I didn’t have a good feeling about this pregnancy from the beginning and I think we were being cautious as a result.  For our girls in particular (who had been asking for a baby sister or brother for months), we felt a need to protect them from any possible pain should something happen during my pregnancy.  I remember thinking that once the test results were back and we knew everything was okay, we could tell them.  I looked forward to that moment. 

Following the test results, my husband and I now had a dramatic shift in perspective.  We went from thinking of names and wondering who the baby would look like and imagining how much our daughters would love their new sibling to the reality of carrying a baby that we knew was going to die at some point during the pregnancy, or giving birth to a baby with serious medical issues who would suffer and likely not make it out of the NICU. 

Since the free-cell fetal DNA test was a “screening” test (not a diagnostic test), we made an appointment for an amniocentesis to confirm the diagnosis.  Our appointment was three days later--the hardest three days of my life.  In that three days, I read everything that I could about Trisomy 18 and the reliability of free-cell fetal DNA tests and prayed for a miracle that somehow the results were a false positive.  Rationally, I knew that the chance of this was slim to none, but I prayed for it anyway. My husband and I arrived at the appointment for the amniocentesis, and had an ultrasound before the procedure.  Within 30 seconds, the ultrasound technician told us that we wouldn’t be doing the test because the baby didn’t have a heartbeat.  Again…words that expectant parents never want to hear. 

Everything seems to remind me of our loss…seeing a family with 3 children…seeing a baby boy (we were having a boy)…seeing a pregnant woman…having to prepare and give lectures on prenatal development and the influence of maternal age.  I am writing this post on my due date--November 2, 2016.  This was a tough day for me.  A good friend took charge and made sure that I wasn’t alone today.  I’m so thankful for that.  I’ve made a lot of progress in the past few months and my “moments” have become less frequent and less intense.  So, yes, it does get better with time.  However, when today came, I wasn’t quite prepared for the raw emotions that poured out of me.  Today was a reminder of what could have been, which I think is one of the hardest parts of pregnancy loss—the loss of all of the hopes and dreams for who this little person could have been.

As for my healing process…I can say that my husband has been (and remains) a constant source of strength for me.  We may grieve differently and at different times, but we remain strong for one another during our individual moments of weakness.  I recognize how lucky I am to have him in my life.  Every phone call, text, gift, hug, or word of encouragement from a family member or friend helped me more than they will ever know.  Every conversation that I had with someone who shared their own story with me made me realize that my loss was real and my feelings are valid. 

Am I blessed to have two healthy, incredible children?  Absolutely!  This experience has made me realize what a miracle it actually is to create and give birth to a healthy baby.  So many things must align perfectly for that to happen, which we don’t seem to think about until something goes terribly wrong.  Each new day gives me another chance to be thankful for the two miracles that we were blessed with.  Every time I pray, I thank God for bringing them into the world. 

Although each of us has a unique pregnancy loss story, the one thing that we all have in common is our loss.  Loss of a life that we created…loss of the hopes and dreams that we had for who he/she would grow up to be.  Regardless of how or when we experienced our loss, or the life circumstances surrounding it, it is a profound and life-changing experience that we should be able to talk about.  The purpose of this blog is to break the silence surrounding pregnancy loss and give people a safe outlet to share their story and receive support.  Hopefully, we can be a source of strength and hope for one another.  Thank you for taking the time to read my story.  Please share your own story with us!