One Family, Two Sad Stories

Posted on Posted in D&E, Multiple Losses, Stories, Trisomy 18 (Edward's syndrome), Trisomy 21 (Down syndrome)

By Arlene

Unfortunately, I am here to tell you that lightning can strike twice.
Unfortunately, I am here to tell you that lightning can strike twice.

My pregnancy started with a home test and a happy scream of recognition. I had wanted to have children for so long, and had worked in schools for over 10 years. Once, a student said to me rather presciently, “You know, I’d feel really sorry if you could never have children.” When I asked her why, she said, “Because you love them so much.”

I wanted a girl so badly. I imagined sew dresses for her, dress her up, braid her hair and take her to ballet classes.

In hindsight, my life and my job were a cruel, yet kind preparation for the months ahead. I was a special education teacher. I knew what it meant to have a special-needs child. I’d seen firsthand what it could do to relationships: the broken marriages, the siblings who were less important and forever scarred, the addictions of parents who were never able to deal with the fact that their child had so many insurmountable issues.

I was 33 years old at the time. My obstetrician really didn’t recommend prenatal testing. Instead, he threw the idea out and let it lie there for me to pick up. My husband was skeptical about amniocentesis. Given my job experience, however, I knew I wanted to take advantage of every opportunity modern medicine could provide. I admit to being somewhat inattentive when the genetic counselor talked about possible disorders. After all, who expects to have a negative outcome? We decided that if the tests came back negatively, we would terminate the pregnancy.

At the amniocentesis, the doctor seemed to be leaning terribly hard into my abdomen in order to push the needle inside and take the sample. I felt nauseated for the rest of the day and stayed in bed. A few days later, we left to go on our last couple vacation to Hawaii, knowing that our future vacations would be as a family.

A few days before we were due to come home, I called the doctor’s office for the test results. Our idyllic vacation went out the window when the nurse refused to give me the good news that our baby was fine; she just kept uncomfortably saying, “You’ll have to talk with the doctor, he’s at the hospital with a birth right now.”

I finally managed to pin her down by asking if everything was all right, you would give us the results, right? When she replied affirmatively, I thanked her for putting me out of my misery, hung up and burst into tears. I don’t remember how I made it to bed, but I do remember the phone ringing again a couple of hours later and telling my husband to answer it. Afterward that call I could tell from his face that our lives would never be the same. Our baby was positive for Trisomy 18. I looked my husband in the eye and said, “Get me out of here.”

We immediately changed our plane reservations to the first-available flight home. Our doctor said he’d expect us in his office two hours after we landed the next morning. I couldn’t sleep the whole flight; I just sat there in shock, wondering how I was going to survive this horrible nightmare.

Our doctor was wonderful, referring us to a clinic that specialized in mid-to-late term abortions. The staff was wonderful, caring and supportive of our decision. The doctor who was in charge of the clinic met with us and presented us with options. I opted to not see my baby. I also decided to donate my child’s body to science, hoping that perhaps through studying my baby, some researcher might be able to prevent some other mother from going through the hell I was now experiencing.

An IV was inserted with a sedative. That, combined with my grief and sleep deprivation from the night before, caused me to pass out and I slept through the entire procedure. We were instructed to return that afternoon to have more laminaria inserted. I told the doctor that I wanted to be out during this: it was too painful for me to face while awake. By the following afternoon, my body had had enough. I felt weak and dizzy and nauseated, with cramping in my lower stomach and back.

When I woke up, it was all over. I reflexively felt my stomach as I awakened. When I felt the area where my baby used to be, I silently whispered to my baby that I was sorry. And truthfully, I still am. Even after so many years, even after having had another child, I still miss my daughter. I knew all along that I carried a girl.

Just six weeks later I conceived again, and CVS revealed that I was carrying a healthy son. He has been the joy of my life.

A few years later I felt ready to tempt fate again, and given my history, I had the CVS again. My sister assured me that God would certainly not do that to me again. Unfortunately, I am here to tell you that lightning can strike twice. Instead of Trisomy 18, this time my baby had Trisomy 21.

I made the same decision, even though it was not a fatal diagnosis. This time I had to go to a regular clinic to have the termination. I changed clothes in a locker room and put on a paper gown. I cried the whole time. It was a horrible experience. When my husband picked me up, we didn’t talk about it. In fact, we never discussed having another child. I took it as a sign to be happy with what I had and to not ask for more than I had been allowed to have.

Was have two pregnancies with two different trisomies unusual? Common sense would say it was. Do I think about it from time to time? Of course. Do I have regrets? No. Does it sadden me to talk about it? Naturally.

I can say that with the passing of years I think about it less and less, and can usually look back upon that chapter of my life poignantly rather than with self-recrimination and guilt. I am comforted knowing that my first child did not suffer, and that my second child did not have to suffer through what so many other siblings have had to endure.

 

 

photo credit: fierce lights via photopin (license)