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Wednesday, March 11, 2009

My speech

I really wanted to wait until after I gave my speech to post it here. I posted it at Baby Center and Trying to Conceive to receive feedback, but since this is more public than those sites, I didn't want someone from here in Tennessee to read it before they heard it. So, I'll copy it here and in another post will tell how the speech went.

My name is Tamara Belinc. I want to thank you for allowing me to share my story with you. Seven months ago today, my husband and I discovered our second child, a daughter named Jenna, had died in utero due to complications from Trisomy 18, a chromosomal disorder doctors deem as incompatible with life.

As I held her tiny lifeless body in my arms after she was born, I vowed I would do something in her name to make a difference, to keep a family from having to go through what we did, which is why I am speaking to you today in spite of the fact that I am normally a very private person and public speaking is one of my greatest fears. I am doing this for her.

We knew a few weeks before she died at 21 weeks gestation that she was sick. After a routine blood test at 16 weeks showed our baby had a one in 10 chance of having Trisomy 18, my doctor set up an appointment the next day with a specialist. An ultrasound showed that our baby had a cystic hygroma (a fluid-filled pocket on the back of her neck which can be fatal on its own), a clubbed foot and growth restriction, as she was measuring nearly a week behind. We had to wait until the next week to do an amniocentesis because the amniotic sac hadn’t yet fused to the uterine wall. While we waited, I researched the disorder. I found the Trisomy 18 Foundation Web site and connected with other families who had gone through what I did. After the procedure, while we were waiting on the results, my husband and I discussed what we wanted to do if she did have it.

The preliminary results would take just a few days, but the full results would take two weeks. Discussing our options and making a decision were the hardest things we ever had to do. From the research we did, we knew doctors would take no life-saving measures once she was born due to the disorder she had. Our greatest desire was to keep her from pain, but how could we make a decision that would end her life? I was her mother; it was my job to take away her pain and to help her. We decided we wanted to end the pregnancy, or say goodbye early as the Trisomy 18 Foundation calls it, through a labor and delivery abortion. With this procedure, we would have been able to hold her, take pictures and have her remains, so we could have her cremated. We would have just a short time to make memories that would have to last us a lifetime.

Even though I had prepared myself for the diagnosis, I was still devastated when we received the news. I don’t have a lot of clear memories of that day, except for sobbing and saying over and over again, “She was so wanted. I wanted her to so much.”
I didn't think we would have any problems having this procedure done since abortion is legal in the United States. Even my doctor thought we would be able to do so, at first. When we met with her a few days later, she informed us that due to state laws and the political climate in the state, none of the hospitals in the area would allow us to do so. I later found out that most hospitals in Tennessee have stopped doing the procedure. Our doctor recommended we go to Atlanta to an abortion clinic that deals exclusively with late term abortions. It wasn’t what we wanted to do, but I was desperate to keep my child out of pain and do what was best for her. We made the appointment at the clinic.

We learned we wouldn’t be able to take pictures or hold her or even get her remains. I was devastated, but again, my desire to keep her out of pain overrode anything else. I did not want her to suffer. We were also told we would be separated from the women who were having the procedure done for reasons other than fetal anomaly, and I would qualify for what is known as a one-day procedure.

As we left for Atlanta, I felt like a criminal, sneaking away to do something illegal. I was afraid of being judged for doing what I felt was best for my unborn daughter and my family, so only a few people knew where we were going and what we were going to do. No one should ever be made to feel that way when they are making healthcare choices for their loved ones.

When we arrived at the abortion clinic, we were not separated from the other women. My husband and I sat in the waiting room as it filled with woman who were wanting to end their pregnancies for reasons other than a fetal anomaly. It wasn’t that I wanted a perfect baby; I just wanted one that would live. Here I was, surrounded by women who were carrying perfectly healthy babies, when my baby was dying inside me. If the laws in Tennessee were different, we would never have had to go through that. We could have ended the pregnancy in a hospital with our own doctor and not been subjected to women who had everything we wanted.

We were called back three times, and each time, I thought we would be separated from the other women and each time I was wrong. Finally, after almost four hours, we were told because of a mistake they made in the paperwork, we would not be able to end the pregnancy that day. If we wanted to do so, we would have to come back a week later. An ultrasound that day showed our daughter had very little brain matter, and the amniotic fluid was even lower than before, confirming our suspicions that her kidneys weren’t functional.

Making the decision to terminate was the hardest thing we ever had to do, and getting up the courage to go to Atlanta was equally difficult. We knew we couldn’t do it again emotionally. And there were other things to consider. We would have to find someone to keep our five year old again while we were gone. We would have to take time off again from work and pay for another trip. All these things, but especially the emotional ones, were just too much to do all over again. We decided to come home and let nature take its course.

Each day that I carried her, I wondered if she had died, and I was walking around with a dead baby inside me. Each morning when I woke, I wondered if this would be the day she died. If I hadn’t felt her move for a while, I frantically called the doctor to see if I could come in to find a heartbeat. Each day was a waiting game, a game filled with tortuous what ifs and pain. What kind of life could she have if she survived birth? How was this going to affect my marriage? How would our five-year-old react to losing the sister she always wanted, especially if we were able to bring her home for a few days? I was a basketcase. I didn’t eat. I didn’t sleep. I lost 12 pounds in less than two weeks. Somehow, I got out of bed each morning and tried to make a life for my daughter, even though I felt as though I were traveling through mud.

Seven months ago today, we went in to get a more accurate picture of what birth defects Jenna would have. The ultrasound tech told me there was no heartbeat, and I knew my baby was gone and wouldn’t have to suffer anymore.

I have made a vow to change the laws here, to make sure there is always an exception to any law for health of the mother, poor prenatal diagnosis and rape and incest. No shame should be attached to one of the most loving, selfless acts a parent can make in regards to a sick child. If a born child is declared brain dead, parents are allowed to turn off the machines and allow their children to die peacefully. If a child has a terminal illness and all hope is gone, parents can decide to stop treatment. Why couldn’t we make the same decisions for our daughter? Is it simply because she wasn’t born yet?

Even though sharing this story is painful, I have to do it. I am doing it for myself, for my daughter, my friends, but mostly I’m doing it for Jenna and all those other sick, unborn children who shouldn’t be made to suffer due to the laws in a state. Thank you again.

3 comments:

Niff said...

I know I've said this before but you are, without a doubt, one of the most amazing mothers I've seen in a very long time. *HUG*

Beth said...

WOW. That was so powerful and well-written. I am anxious to hear your next post on what happened after you gave your speech. I applaud your courage!!

puppylove said...

(((hugs)))