Jenna's story

We lost Jenna one month ago today. In honor of that and also because of new people who might be coming to my blog, I decided to post the version of her story that is on her legacy page at www.trisomy18.org. I hope I help someone with our story.

My husband, Brian, and I spent three years trying to conceive our oldest daughter, Tessa. After three rounds of Clomid, we were pregnant, and she was born in May of 2003. After going through all of that, we weren't sure if we wanted to try for another baby or not.When my granny died in December of 2007, I knew I wanted to have another baby. I knew she would have loved another great-grandchild, and I was really feeling the baby itch again. So, I asked my doctor to help us, and she prescribed Clomid. The first month didn't work, but we conceived on our second try. We were overjoyed, especially when we found out we were due in December. I thought we would be able to take that month back from the grief we would experience over Granny's death and turn it into something joyous with the birth of our second child. How wrong I was.

Everything was going well with our pregnancy. When I was pregnant with our daughter, Tessa, I was sick morning, noon, and night, but with this baby, I hadn't been sick at all unless I went too long without eating. The worst symptom I had was extreme exhaustion. When I was 16 weeks pregnant, we went to the doctor July 7, 2008, for our monthly appointment. Our doctor asked if we wanted to have the AFP test and warned it had many false positives. I knew this already, but I wanted to have it done to be prepared in case our child had Down Syndrome or Spina Bifida.

Trisomy 18 was the last thing on my mind. Two days later, our doctor called me and said the test showed our baby had a one in 10 chance of having Trisomy 18. I knew it was incompatible with life. I had read about it when I was pregnant with Tessa.My heart dropped, and my doctor said she wanted to set up an appointment with a maternal fetal medical specialist for the next day. We went in and had a level 2 ultrasound done and then met with the specialist. He told us the baby was small, and it was hard to see organs. He did think the baby had a cystic hygroma and a clubbed foot. He thought we should have an amniocentesis done, but we couldn't have it done that day because the amniotic sac hadn't fused to the uterus yet. He wanted us to give it a week, and we scheduled the appointment for July 18.The next week was the longest of my life. I knew in my heart something was wrong, even though everyone told me not to lose hope. The amniocentesis wasn't too bad and didn't really hurt at all. I was expecting it to be much worse than it was. We were getting the FISH results, which offer results in 48 hours instead of the normal two weeks.My doctor called me on July 23 and told me the FISH results showed our baby was a girl and she had full Trisomy 18. She said that she had never seen the FISH results be different or better than the final results. Before we made any decisions, she wanted to wait until the full results came in. She said she believed if we wanted to, we could say goodbye early and deliver at a hospital in Nashville.

I thought that was what we would do, but I still had many thoughts going through my mind. How could I say goodbye to the baby I wanted for so long? How could I make the decision to stop her heart? I'm not a religious person at all, but I do believe in a higher power and a place we all go to when we die. Brian and I talked about, and we decided we would say goodbye early. We did not want her to suffer, and we both had always believed in the quality of life over the sanctity of life.That night we discussed what we wanted to name her. I said something about Mary Grace, and Tessa said she didn't like it. She wanted to name her Jenna Grace. We decided since she wouldn't ever get to know her sister, we would let her name the baby. Instead of the baby, we now had Jenna Grace. We received our full results July 29. We went to see our doctor, and she said we would not be able to deliver in Nashville. We knew we wouldn't be able to do it at the hospital in Murfreesboro, because it was a Catholic affiliate, but the news we wouldn't be able to do it in Nashville shocked me.

Our doctor said it had to do with the political climate in the state, along with the law here that states second trimester abortion has to be done in a hospital. Many hospitals just don't want to have to do it as many doctors are opposed to it ethically. We were facing the hardest decision of our lives, and we were being treated as though we were doing something criminal.

She told us our best option was to travel to the Atlanta Surgi-Center and have a D&E. She said it was not an abortion clinic, and they had a special program for parents who had a poor prenatal diagnosis. I called and made the appointment for the weekend, as they only did the procedure on Thursday, Friday and Saturday. They asked for a lot of information, including my weight, which I told them, and I also had my doctor fax my records to them. Brian and I made plans for the weekend. Our appointment was scheduled for Aug. 2, 2008, and we left on Friday. They told us I was eligible for the one day procedure. My mom was keeping my daughter for us. On Saturday, we traveled to the clinic and found out we had made a huge mistake. Our doctor had been wrong.

It was an abortion clinic, and I was grouped in with the other ladies, who were giggling and laughing and joking, happy their pregnancies were soon to be over. I wanted to yell at them and tell them I would take their babies, and they should be happy to be pregnant with a healthy child. I’ve always been pro-choice, so it was very confusing to feel that way.I was called back to pay and go over some paperwork. I thought we would be separated from the other girls and women then. She asked me again what I weighed, and I told her. After that, she made some notes and said I would have to wait until the lab technician got there, so they could weigh me as there had been a mistake. She sent me back out to the waiting room. About 30 to 45 minutes later, my name was called again, and I thought for sure we would be separated then. I was wrong again, and they once again sent me out into the waiting room. We had to wait again. The room was filling up with more and more girls and women and the people they had chosen to drive them home after the procedure. My name was called again, this time by the ultrasound technician.

She led me back to the ultrasound room and said a mistake had been made. Because of my height and weight, I wasn’t eligible for the one-day procedure. I had to have the two day, and they couldn’t do it then. She also said the clinic had a special procedure for treating parents like us, and it hadn’t been followed. She apologized and said she was going to do an ultrasound to date the pregnancy and asked if Brian wanted to see. I knew he would, so she went to get him and explained what had happened. He was also furious and said he felt like he had been mislead. I felt like it, too.

The ultrasound showed the baby was measuring two weeks behind and said it looked as though she didn’t have much brain matter. She quoted me a new price, lower because the baby was smaller and said we could reschedule for the next week. We met with the counselor and left. We wound up staying in Atlanta for the weekend, because we had made reservations for two nights, and checkout time had already passed.

More decisions had to be made. Did we want to travel back to Atlanta again to have the procedure done? Or should we try to find other options? I was beginning to think we just let nature take its course and let her go on her own.

We met with the doctor on Aug. 5, the day before my 31st birthday. She told us we could travel to Louisville, KY or Arkansas, but no other place was closer. Our specialist had called Atlanta to complain and had decided not to send any more patients there. She also said she hadn’t known it was an abortion clinic, or she would never have sent us there. I told her we had decided to carry to term, and she agreed it was our best option. She listened to Jenna’s heartbeat, which was going strong. We had only had one appointment where her heart rate was low, and I believe she might have been sleeping then. Her strong heartbeat showed us how stubborn she was, and we decided to set up an appointment for the next Monday to see what birth defects Jenna had. I would be going back to the specialist.

Our appointment was Aug. 11, and Brian couldn’t go with me. He had to take Tessa to her kindergarten check-up, so I asked my aunt to go with me. I’m glad I did. The ultrasound technician was so nice and chatty. When she moved the wand over my tummy, I knew something was wrong. Jenna was not moving. The ultrasound tech said, “Sweetie, I’m so sorry but there is no heartbeat.”

I just cried a little. I think I was in shock. I had been preparing myself to go to term, and she had already died. I was sad, but it hadn’t really hit me yet. I kept thinking she was no longer in pain and would never be. Our specialist sent us back to my doctor, who told me to come in later that night to be induced. I wanted to do it right away because Tessa started kindergarten on Friday, and I wanted to be there for her. Another aunt said she would keep Tessa, and we arrived at the hospital at 8 p.m.

Our first nurse, Dawn, was wonderful. She explained what was going to happen. They would insert cytotec pills every six hours, which would cause me to dilate. I could have as much pain medicine as I needed, and if I needed an epidural, I could have one, too. The cytotec insertion was very painful, and I began having cramps soon. They gave an Ambien to help me sleep, and some Dilaudid for pain. At 5:30 a.m., I received my epidural.

Brian was wonderful through all of this. At 7 a.m., our second nurse came on shift. Her name was Marta, and like our first nurse, she was an angel. Jenna was coming feet first, and Marta said I would have to dilate farther to deliver her. She also told us it would take awhile. She said if she had been coming in head first like she was supposed to, she would have been born much sooner.My mom came to the hospital, and I sent Brian home to take care of some business that had to be done before Tessa could start school. I knew he wouldn’t be able to handle it all emotionally, and I also knew he didn’t want to see Jenna after she was born.

Around 11:30 a.m., I felt something and called for the nurse, who checked and said Jenna was on her way. The doctor came in, and at 11:50 a.m., Jenna Grace was born. She weighed 4.4 ounces and was a little over 6 inches long, which was very small for gestation, normal for a Trisomy 18 baby. The delivery process had been rough on her body. Because her skull hadn’t fully formed and she had little brain matter, her little head had collapsed before delivery. No mother should ever have to see something like that. She had all 10 fingers, and they weren’t clenched like many Trisomy 18 babies. She had one clubbed foot, but all 10 toes where there. Even though her face was disfigured because of the damage, I could tell she would have had Tessa’s nose.

We have pictures, but they aren’t very good. She was almost 21 weeks when she was born.We had a memorial service Aug. 24, 2008. It was well attended by my family. The preacher who spoke mentioned my granny and said she was taking every opportunity to rock Jenna Grace in Heaven. My sister-in-law also drew a special picture for me. She asked me a few weeks before for pictures of Granny’s hands, which I had because I’ve always loved hands. She drew Granny’s hand reaching down to a sleeping angel baby. I love it and have it on my end table.

I miss my little girl every day, and I wish I could have had five minutes with her alive. Of course, I know if I had had those five minutes, I would have wished for five minutes more and five more minutes for all of time. She is no longer in pain and will never know it, so I can be happy about that but sad she is gone.