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Thursday, July 29, 2010

Jenna's story

I have a lot of new readers on my blog who might know that we lost Jenna to Trisomy 18, but who maybe don't know the whole story. That's one of the reasons I'm telling it. Another reason is that Jenna's two year "angelversary" is coming up, and I want as many people to remember that day as possible. The third reason is because of a new blog,, which features the stories of women who have lost babies, and I plan to submit my story to them.

Jenna's Story

This story is a long one, so please bear with me. I was so excited in the spring of 2008 to find out we were expecting again. My oldest daughter was almost five years old, and I was ready for another baby. My daughter was over the moon about being a big sister. My family had also experienced the loss of my grandmother just four months earlier. She was the backbone of our family, and we were devastated. We were all ready for something happy to happen, and my pregnancy and the new baby were going to be just that.

The pregnancy progressed very normally. I wasn't sick like I had been with my older daughter, just extremely tired. I was so glad to get out of the first trimester, and my 16 week appointment was scheduled for the Monday after Fourth of July. The cookout at my aunt's house that weekend is one of the last times I was truly happy without any bittersweet feelings popping through.

At my appointment that Monday, my doctor asked if I wanted to have the AFP done. This tests for Trisomy 18, Down Syndrome and Spina Bifida. I took the test because I liked to be prepared. If I was going to have a baby with Down Syndrome or Spina Bifida, I wanted to be prepared for the birth. I didn't allow myself to think about the possibility of Trisomy 18. A diagnosis like that just didn't happen to us.

Two days later, my doctor called me herself to give the results of the AFP test. I had a one in 10 chance of having a baby with Trisomy 18. She reassured me that this test had a lot of false positives, and this did not mean our baby had it. It just measured the risk factors, but even so, she wanted me to go for a level 2 ultrasound with a maternal fetal medical specialist and had already called them. I had an appointment for the next day.

My husband took the day off to go with me. At this point, I was nervous but not scared to death yet. The night before, I researched the AFP and the rate of false positives. Besides, the odds were in my favor. I had a 90 percent chance of having a healthy baby. I wasn't going to be that one. My fears came on stronger the next day after the ultrasound.

Jenna was measuring behind, and she was curled up in a ball for most of the ultrasound. The ultrasound tech and the MFM thought they saw a cystic hygroma (a fluid-filled pocket on the back of the neck) and a clubbed foot, but he couldn't be sure. He recommended an amniocentesis. He explained the baby could have Trisomy 18 or even one of the other chromosomal disorders. We opted to have it done, but because my amniotic sac hadn't yet fused to the uterine wall, I had to wait a week.

Even though I hoped for the best, deep down, I knew she had it. I knew I wasn't going to be able to bring her home. I spent the next week doing my research, reading about women who had been given a diagnosis of Trisomy 18. Some carried to term, while others "said goodbye early," which is what the Trisomy 18 Foundation calls ending a pregnancy due to the disorder. My husband and I discussed our options and went for the amnio.

We decided we would say goodbye early if our baby had a disorder deemed incompatible with life. If she had Down Syndrome, Turner Syndrome or any of the other non-fatal chromosomal disorders, we would carry to term. Even though I am not religious, I prayed for a non-fatal diagnosis. I wanted her so bad. I wanted my older daughter to be a big sister. I wanted another baby. I had always wanted a houseful.

My FISH results were due on Wednesday. I was at work (at the time I was the Lifestyles Editor at a newspaper), and I carried my cell phone in with me during an interview. I told them I was waiting on my amnio results, and the lady made a joke about me being excited to find out the sex. I didn't tell her any different (later, she sent me a sympathy card, reminding me of that day). Just an hour later, while I was still at work, the call came. The FISH results showed she was a girl who had full Trisomy 18. This meant all of her chromosomes were affected.

My doctor wanted me to wait to make any decisions until the final results came in. I told her we would probably be terminating the pregnancy. She said she knew we wouldn't be able to do it at her hospital because it's Catholic-affiliated, but we should be able to do it in Nashville. I left work soon after, sobbing all the way home. I just remember saying over and over again, "She was so wanted. I wanted her so much." I was devastated. I didn't eat, and I couldn't sleep.

I had to tell my five year old, Tessa, that her baby sister, the one she wanted so much, was very, very sick and wasn't going to live. We decided that night we needed to give her a name. I suggested Mary Grace, but Tessa didn't like it. We made the decision to let Tessa choose the name since that was going to be her only connection with her sister. She chose Jenna Grace.

The full results came back in the next week, and we met with my doctor. She wonderful and was apologetic, explaining that because of the political atmosphere and the state laws in Tennessee, none of the hospitals in the area would end the pregnancy for us. I wanted to say goodbye through a labor and delivery procedure, so I could have pictures of Jenna and hold her, trying to make memories that would have to last a lifetime. Instead, she said we would have to travel to a clinic in Atlanta, four hours away, to have it done. I wouldn't be able to see her, hold her, have pictures made or get her remains back in order to have her cremated.

Brian and I discussed it. Even though I really wanted all of those things, I also wanted to do everything in my power to keep her out of pain. That was my job as a mother, to keep her from hurting. If I was selfish in wanting those things and carrying her to term, I couldn't guarantee that she would never suffer. We decided to go to Atlanta.

When I made the appointment, I was asked a ton of questions, one of those specifically being my weight. I told them twice. I also informed them this was a case of much wanted baby who had a chromosomal abnormality. I had to have my doctor's office fax my files to them, which also included my weight. We left on Friday to go to Atlanta. I felt like we were sneaking away to do something wrong, something illegal. I didn't tell many people what we were doing because I knew I would face judgment when that was the last thing I needed.

I know some people would say I was doing this out of selfish reasons, that I surely just didn't want a special needs baby. That is so far from the truth. First and foremost, I didn't want Jenna to suffer. Most doctors won't do any kind of medical treatment on babies with Trisomy 18. Parents who make the decision to terminate a pregnancy are doing so out of love, making one of the most selfless decisions a parent can make. I wanted her here with me more than anything, but my love for her allowed me to over ride that in order to do what I thought was the right thing.

The clinic we were going to had a separate plan for women who were terminating due to medical reasons. I was supposed to be separated from the women who were ending their pregnancies due to "social reasons." That didn't happen. I was called back to verify my weight, which I told them again. I thought we would be separated and taken to a special waiting room, but we weren't. The waiting room continued to fill up with women, some of them laughing and giggling and talking about getting it over with. There they were, happy to be ending a pregnancy when I just wanted a baby who would live. I wanted to shout to them and tell them I would take their babies, but I didn't. I just buried my head in my Harry Potter book, which is kind of like comfort reading for me.

I was called back again to be weighed. I had lost 12 pounds in less than a week. I thought then we would be separated from the rest of the women, but again, I was wrong. Brian was starting to get mad, wondering what was going on, when I was called back a third time, this time by the ultrasound technician. She explained to me that they had made a mistake in regards to my weight and how I was treated. I didn't qualify for a one day procedure like I was told over the telephone. I would have to do a two day procedure, and they couldn't do it that day. I would have to come back if we wanted to end the pregnancy.

She decided to do an ultrasound to date the pregnancy and asked if Brian would want to come back. He was furious when we explained the situation to him. She did the ultrasound, which showed Jenna's growth was even farther behind. She had very little fluid, which indicated her kidneys weren't working, and the tech said she had very little brain matter. Brian and I just sobbed on the table.

After meeting with the counselor, we left. We knew we wouldn't and couldn't go back there. After a lot of soul searching, we made the decision to carry Jenna as long as she lived. It wasn't the choice I wanted, and I still don't feel as though it was the right one for me but I had no choice, really. No one in Tennessee was willing to help me.

The next few weeks were agonizing for me. Because her fluid was so low, I had trouble feeling her move. I often wonder if that would be the day she died and if I would walk around with a dead baby inside of me. I often felt like I was losing my mind. Two weeks after our trip to Atlanta, my aunt and I went to our specialists office to do an ultrasound to see what birth defects we would be dealing with exactly. Brian couldn't go with me because he had to take Tessa for her kindergarten check up. The tech was chatty, and she knew our situation. She told me up front that because of what we had gone through, she would tell me exactly what she was seeing on the screen and then let the doctor elaborate. She ran the wand over my belly and said, "Oh sweetie, there's no heartbeat."

I cried a little, but over the last month, I had done more than my share of crying. At that point, I felt kind of cried out. I didn't know I had a lot more tears to come. I met with my doctor who told me to come back later that night to be induced. I had to tell Tessa her sister was dead, which is one of the hardest things I've ever had to do. We went back in that night and had wonderful nurses who attended to us. The next morning, I knew Brian wouldn't be able to handle seeing Jenna, and because of everything we had been through the last month, there were kindergarten things for Tessa that we hadn't gotten done. I sent him to do it and had my mom come to the hospital.

Jenna Grace was born at 11:50 a.m., Aug. 12, 2008. She weighed 4.4 ounces and was 6 inches long, much smaller than what she should have been for her gestational age, which is common for babies with Trisomy 18. She did have a cystic hygroma and a clubbed foot. Also, her brain and skull never developed, and this caused her skull to collapse during the birth process. Luckily, the nurses covered most of it up with a little hat, but I still saw more than a mother ever should have. We had her cremated, and her urn, along with her pictures, sit in a small curio cabinet on my wall.

I have learned a lot since that day. I vowed to make a difference for Jenna. I first wanted to change the laws here in Tennessee so that hospitals would have to perform abortions in the case of health of the mother, poor prenatal diagnosis and rape and incest. I wrote a ton of letters, and I even gave a speech in front of some of our state representatives about it. That is one of my proudest moments. I have often heard, I won't do prenatal testing. It doesn't matter what it shows; I'll love my baby no matter what. I loved my baby. Women who terminate due to poor prenatal diagnosis aren't doing so because they don't love their babies and don't want them. They do. They just don't want them to suffer. One of the things I have learned is that no matter what, the decisions a parent with a baby with Trisomy 18 make always come from love.

Because of Jenna, I am back in school. I am going to be a grief counselor and help women who have gone through similar losses.


Ami said...

Thank you for telling your story.
I have gained a new understanding.

Pam the Realtor said...

Thank you for sharing. No mother should have to deal with anything like this, but I would have made the same decisions.

joven said...

beautiful blog..pls visit mine and be a follower.. thanks and God bless..

Whitney said...

Thanks for sharing your story. I think it's wonderful that you want to be a grief counselor now. Because of my experience with trisomy 18 and losing Isaac, I've started school to become a nurse. Best of luck with school!

Bluegrape said...

Thanks for sharing you story. No mother should go thru the decision you made or even considered.

Big Love, Big Acceptance - or so I say said...

Thank you for sharing your story. And lots of love from one T18 momma to another.

This is a decision no parent should ever have to make. It's hard enough already - let alone adding negative judgments from others who just don't get it.

It makes me so mad that the medical community is allowed to add another layer of difficulty to making such gut-wrenching decisions. I don't impose my religious beliefs on any hospital - why should they get to do so to me, or anyone else? It's mind boggling! Thank you for all the hard work you're doing!

I'm so glad you're working at becoming a grief counselor. I too plan to pursue that path - when I'm a little more ready to support others going through loss.

Lots of love to you.

biojen said...

Thanks so much for leaving such a supportive comment on my blog. You made me really grateful that I didn't go to Atlanta. I would not have been able to handle that waiting room. I'm so sorry you couldn't find someone like I did. I'm even more sorry it was ever even necessary. I wish our babies were here, alive and healthy. Take care, sweetie.