I Was 12 Weeks Pregnant When I Discovered My Much-Wanted Baby Had Serious Abnormalities

After trying to have a baby for about six months with no luck, I started tracking my cycles more closely, and realized they were all over the place. My doctor discovered I had polycystic ovary syndrome, and was not ovulating. We went to a fertility doctor who gave me medications to promote ovulation, and at the right time we did it the old fashioned way.

Two weeks later I ran out and bought a pregnancy test. It was positive! I don’t know how to put into words how excited I was feeling. The next morning I laid the test out on the couch where my husband sits and when he saw it, he was absolutely beaming. We held each other and cried happy tears, and couldn’t believe the first treatment worked. Then we wondered ‘Is it going to be a boy or a girl?’

But at 12 weeks, blood work and chromosome testing showed it was a boy — and he had some abnormalities. Then an ultrasound with an amniocentesis showed that our baby had Trisomy 21, which is an extra chromosome. He had physical abnormalities that included fluid around his head, his kidneys were smaller than they should have been, and not a lot of amniotic fluid, which he needs to develop properly.

It was the worst news of my life to hear he was so sick.

The doctors told us, you can wait and see what happens. You may miscarry, you may have a stillborn, or your baby may be born alive, but we can’t promise what the outcome would be. There were a lot of unknown variables. So we had to make a decision that was based not only on medical facts but based on our gut.

From the issues that were presented to us, the possibilities, it did not seem that he would have a normal healthy pain-free life. And so we decided that we would terminate the pregnancy. We wanted to do what was best for the baby.

We had very much wanted this baby. The minute you get the positive on a pregnancy test you start imagining what your pregnancy is going to be like, what your baby’s going to be like, how he or she is going to grow up. And I never really thought about the fact that it may not happen that way. There still is a lot of grief around what we had wanted and what could have been.

The days between diagnosis and the abortion, I honestly don’t remember a lot. I didn’t really get out of bed. I sort of shut down. I shut myself off from the pregnancy, which I think was a defense mechanism. I had five days that I was going to spend with this baby and knowing that we weren’t going to be able to keep him, it was really hard.

We decided to name him after we decided that we would end the pregnancy. We named him Max. It’s always been one of my favorite names. My husband and I both got memorial tattoos for him. I have one on my wrist, it’s a tree branch with two birds sitting on it and they’re watching another bird fly away.

I was 15 weeks exactly the day of my abortion in early November of 2016. Every doctor, nurse, and patient care provider that I came into contact with was very compassionate, sympathetic, professional. Not once did I feel like I was being judged. A lot of them hugged me and said that they were so very sad for my loss.

I actually ended up writing to the genetic counselor and thanking her and the whole staff. It was the worst day of my life and it could have been so much worse.

I do not regret the abortion. Another couple may have made a different decision if they were in the same shoes we wear. But I respect that too because I would never want to take away a woman’s choice to do what she wants with her body and with her pregnancy and with her family.

I had to give my body time to heal, time to recover. In January of 2017 we went to an appointment with the fertility doctor. I was very nervous about what would happen in a second pregnancy. It’s like everything you thought you knew is gone, is broken.

When I later got pregnant with my living son, I was very nervous. At one point the maternal fetal doctor said this is a very boring and uneventful pregnancy. It was wonderful to hear.

I don’t think I truly relaxed until my son was born in November of 2017. And even then, the first words out of my mouth were, ‘does he look okay? Is he normal? Is he okay?’ And he is, he’s my beautiful, happy rainbow baby.

I struggle sometimes with the fact that I wouldn’t have him if we hadn’t lost that first baby. I think about Max every day, without fail.

I always say I hold one baby in my arms and one baby in my heart. Max is in our hearts.

  • As told to Diane Herbst

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