Sunday, August 1, 2010

Mom to Jenna Grace Belinc
Stillborn on August 12th, 2008
Shelbyville, TN

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 was wonderful and 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 a 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.


Anonymous said...

your story touched me in a very deep..profound way..I am Catholic( pretty much prolife, except for cases of rape etc)..I had my first 2 children in my 20's(1st marriage)and my last 2 babies(Now 3 and 1) now in my 40's..I breezed thru those pregnancies,(Level 2 u/s only)No other tests..and was lucky/blessed to have them healthy and beautiful...(I did lose Sophias(my 13 month old)twin at 9 weeks)..I always thought if they did have a chromosonal issue(my age being the factor)I'd "deal with it"..You really showed me the feelings associated with the loss..I am soo sorry u endured such a heartache and the loss of your precious baby girl..

Carolyn said...

I am sorry the political climate in TN precluded you from being able to do what needed to be done. I am in Oklahoma and it was about the same for me as well when the MFM specialist at Oklahoma University Med Ctr pushed an envelope with termination info in it and then told me he "couldn't discuss it with me any further". It was a back alley clinic not affiliated with any of the hospitals and I was fast approaching the cut off for the back alley clinic and I did NOT want a D&E. They also wanted $3000 CASH up front. My insurance would've paid for it, but I didn't feel comfortable going to a back alley clinic for a procedure that would take 2 days (and not be in the hospital for the duration).

In order to have an induction done before 32 wks in the state of OK, your CHOICE is in the hands of the ethics community. TWO OTHER DRS got to make that choice, which they approved, so I guess she really was "incompatible with life" (Trisomy 13 - the AFP and all the old mommy bloodwork was NORMAL, dammit! It showed up on my level II u/s at 19 wks).

Ultimately I opted to go to term, since my (Mormon) dr told me that her s/b was imminent. We lost our only other child to s/b in 2004 and by this time I was 40. This was my last pregnancy and I figured since I was getting screwed out of having her as our daughter on earth, I might as well enjoy the little rest of motherhood I would experience antenatally.

No woman should be FORCED to endure what I did in waking up every day for 15 weeks wondering, "Is this the day my baby will be stillborn?" when they have such a horrid diagnosis. I know there are rabid prolifers out there who really need a reality check. Not all babies who are terminated would've been cute and adoptable. My girlfriend went to Dr. Tiller in KS b/c she couldn't have an induction in OK for a Trisomy 22 baby. Her experience was much the same as yours with the protesters =0(. Another thing they don't realize is the mother's life might not be in jeopardy while the baby has a parasitical relationship on the mother, but once that baby dies in utereo, if she doesn't go into labor right away, infection can set in and that's what happened with s/b #1 for me.

Carolyn said...

oops, I didn't read before I posted. The baby I carried to term (it was the easy way out; I lived in denial and didn't want to DEAL WITH IT and my dr told me that a 2nd tri induction is really hard on the cervix and can impact future fertility)had Trisomy 13 and holoprosencephaly. It's certainly not fun living in the Bible Belt meeting nice igno-runt folk who say, "Oh, I'll pray for a miracle." I would tell them (because EVERYONE knew I was pg after having lost baby #1 to s/b it was a *miracle*), "No, pray for a merciful end".

Alison said...

Wow... your story really touched my heart. I terminated a pregnancy last year as a result of poor prenatal diagnosis. You are so right - I did not make that excruciating choice because I did not want my son. I wanted him more than anything, but I also did not want him to hurt.
I miss him every day.


Jillian said...

I really respect the effort you are making to change the way the legal system deals with these types of pregnancies. I carried my daughter with trisomy 13 to term (or almost - she passed at 36.5 weeks) and would likely have done so regardless of the law, but that was my choice and without question it should be the mother's decision. There is no 'good' way to deal with these pregnancies, and no one has a right to offer their opinion about what the 'right' way is, especially if they haven't lived through it themselves. With the trisomies (other than trisomy 21) doctors aren't even willing to provide medical care to those few children who are born alive, so the medical system is totally out of whack with the legal system leaving mothers in an absolutely hopeless situation.

I think most people aren't even aware that these types of fatal diagoses exist and view abortion as without exception an 'oops' form of late birth control or a selfish decision of parents who don't want a handicapped child. It is really important to raise awareness of these disorders and to distinguish this issue from the general pro-life/pro-choice debate which people already have such deeply entrenched opinions about.

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