Diagnosis: T-21

Diagnosis: Trisomy 21

By Hope

I was over 40 and pregnant, and it scared me. When I would tell family and friends about that fear they'd tell me, "but, so many women over 40 have happy, healthy babies." I couldn't help it. In the back of my mind there was a little voice that rang loudly about the risks and possibilities of what could be, but I pushed it out when the doctors told me not to worry. Even though there was that voice of concern, honestly I was thrilled to pieces.  My husband and I were very surprised by this pregnancy.  We had been together for ten years and needed a lot of help from fertility doctors to conceive our twins six years ago.  My OB told me this was so normal.  Just when you don't "try", it happens. What a miracle! I felt so blessed and couldn't wait until my 12 week scan to confirm that I was silly to worry and could shout our news to the world.

That was until the day of the screening and the technician continued to make excuses as to why it was taking her so long to take the measurements. She kept making jokes that the baby wasn't behaving. Then the doctor came in and made the same joke. I knew something was wrong. Then he said the NT was measuring very thick. At that moment my life changed forever.

The CVS was done a week later and we waited for the results. We found out the problem was T21. My genetic counselor was wonderful, my doctors were supportive and helpful, but we were a mess. How do you make the decision of what to do? We talked a lot in the days before deciding. We talked about what life would be like for our baby with severe health issues, and how it would effect our current children's lives. My genetic counselor talked a lot about how no decision was a "better" decision; it was what we thought would be better for our baby, our family. Sadly, we decided to terminate the pregnancy.

The 24 hours prior to the termination were the worst. I felt like I was walking through a nightmare and that I would eventually wake.  I am still waiting. With much regret and the deepest sadness I have ever felt in my life, I went to the hospital, was put to sleep and when I woke the baby was gone. Just like that. All the hope and the happiness gone in a flash, and in its place was grief and guilt. The hospital staff and doctors were as compassionate and kind as I could have ever asked for. Our baby's remains were cremated and buried in a cemetery near the hospital with other unborn babies.

The first four weeks after the termination were torture. My milk did come in. I didn't know this could even happen. There were days I felt like I was completely "losing it" and it was then that I knew I needed grief therapy. Every day is still difficult and I often think about what it would be like if I were still pregnant. I regret not asking my doctor about the option of Labor and Delivery so I could hold my child at 17 weeks, see my child if only for a few minutes.

I regret the fact that we have had to bend the truth when dealing with family members whom we know would not agree with our choice. I seek out friends and family that are supportive even if they don't understand how I am feeling. I am keeping my distance from family and friends who are judging and expecting me to be "farther along" in the grieving process. There are "triggers" that put me right back to where I was in July,  like when my sister-in-law gave birth to a healthy child last week. But, I am also feeling more connected and thankful for my husband and my children.

I am yearning to learn the gender of my baby as this was something we weren't prepared to do at the time. Now I am ready to name my baby,  honor my baby. What I have learned by spending time on the AHC web site is that every woman, every family has a different journey. While there is a shared deep and utter sadness with every woman's story, there is also a story about a child and a family that loved the child even though they will never be able to watch the child grow, learn, live. Yet, the child exists and the love exists and will never end.

I wonder when the pain will dull. People have said it does. In the meantime, I will continue to look for ways to grieve and honor my baby.


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