Prenatal diagnosis and Going To Term

I had just been told that my unborn baby had anencephaly - a rare and horrible birth defect that meant she was alive but had no brain. I cried as the doctor patted my hand and tried to explain what had happened. The baby's neural tube (spine) had not closed completely at the top which it was supposed to do 21-28 days after conception. Depending on how severe the anomaly (defect) was the baby could be stillborn or live only a short time after birth. (In rare cases, I learned, the child can survive.)

Soon after my husband, Dave, and I had married in 1986, we had three healthy children close together; Laura, Susan, and Andrew (Drew). We decided to wait and see if we wanted to plan for more. I found out you can't always plan your life.

What had caused this horrible defect I wondered? Was it me? Was it something I did or didn't do as she was forming in the womb? I learned later that doctors don't know what causes anencephaly and that it has existed as far back as Egyptian times. My husband wondered if he had caused the baby's condition.

We drove to Salt Lake City's University Hospital to confirm the diagnosis. Friends took care of our young children. Laura was now 5, Susan was 4 and Drew was 2. During the long drive I planned the baby's funeral. I wanted to talk about it but Dave couldn't.

The doctor looked at the previous sonogram pictures and then at the kicking fetus on the screen. He said, "Yes, it is anencephaly. How can we help you?"

I asked what our options were and the risks with each option. Since I was only 4 weeks along we had three options; abortion, induce early or go to term.

I already knew in my heart that I would carry this child to term. I just didn't know how I was going to do it. We were told not many women choose to continue this type of pregnancy, I asked him if he knew of any support group for us but he didn't,

Afterwards we talked to a perinatal loss counselor, I asked the counselor for a picture of an anencephalic baby but she couldn't find one. I asked if she knew anyone who had been through what we were experiencing, Again - nothing. I felt so alone,

As we left the building I saw babies everywhere, I cried. I wanted to hold a newborn so much. We went back to our hotel and held each other and cried. I remember saying, I just want my baby back. Spiritually and emotionally I had lost my child, Physically I was now my baby's intensive care unit for the next six months. My due date was set for May 8 ; the day before Mother's Day.

One month after we discovered our baby's defect, we were approached by a younger couple. Kathleen and Dave were pregnant with their second child. Kathleen said there was something wrong with their baby's heart. Reed David, their unborn son, had Hypoplastic Left Heart. His heart had not developed properly and would be too small to sustain him once he was born. The doctors gave him three days to three weeks to live. Now there was someone else who was facing the same thing as me!

Kathleen and I called each other often. She was due before me. They had decided to bring Reed home and to love him for as long as they could. Reed was born February 23, 1993. He was a beautiful baby, He died six days later,

When our baby was 19 weeks we discovered by sonogram that we had a girl. We named her Kristina Marie; the name I had chosen before her conception.

I was referred to the local group Compassionate Friends; a support group for parents who have lost a child. Unfortunately I was politely informed that I didn't fit their groups criteria because my child wasn't physically dead yet. I was devastated. I had four more months to go. I questioned God's plan. I still had Kathleen but I needed someone who had already taken an anencephalic baby to term to show me how it could be done.

It wasn't until my brother sent me a book that a woman had told him to send me that I found that person. The book listed pregnancy loss support groups. I immediately told him to find her again which he did. I called her and we talked for hours. I'll never forget what she said about the daughter she lost named Rachel Marie; If telling you about her helps you then it helps me feel that her life was not in vain."

I wrote to the support groups listed in the book, The groups SHARE (Source of Help in Airing and Resolving Experiences) and AMEND (Aiding Mothers Experiencing Neonatal Death) responded. The staff at SHARE especially helped me with phone calls and letters since I lived hours away from the nearest SHARE chapter. SHARE, the genetics counselor at Shodair Genetics Hospital in Helena, MT, and prayer became my lifeline. I had 1-800 number to Shodair that I could call anytime to talk, cry or request information on anencephaly.

I felt an urgency to take control of whatever I could-collecting pictures of anencephalic babies, planning the birth, the funeral - anything to make me feel in control of this totally out-of-control situation.

Word spread fast in our town. I was still amazed at the number of people who would ask me when I was due or what number child this was, Sometimes I would answer and move on. Other times I would explain my situation to them whether they wanted to hear it or not. Dave and I wanted to run away but we knew there was no place to hide.

My friends helped me with cheerful notes and my Bible Study even cleaned my house for me. Others would come over and prepare lunch for my kids so I could put my feet up and rest a while, Secret Pals left gifts on our doorstep, A "casserole shower" was given in Kristina's honor. (Friends each brought a casserole dinner for us to freeze and eat later.) I'll never forget all the special support we received.

Just before Kristina's birth, Dave's Mom, Grandma Jo, died of lung disease. Before she died she told us that God had chosen her to go first - to take care of the baby. We buried her on May 4th. At forty weeks and two days I was induced, We felt Grandma's presence in the delivery room the following week when at 8:3OPM Kristina Marie was born. I wanted to see her but was nervous to at the same time, I started to cry as my husband placed her in my arms, I couldn't give this baby any more life. I wanted so much more for her. She was beautiful with all of her facial features, ears and hair. She gave no respiratory effort and died nine minutes later in our arms. It was May 10, 1993 -the day after Mother's Day.

I wanted the community to acknowledge my daughter. I believed she had a right to an obituary, public funeral and to as much life as she could take. I had planned everything as well as I could and felt I, her mother, had done as much as I could for her.

When I was first diagnosed, I received a newsletter with stories from parents who had terminated. At that time it was very upsetting to me. Now I know that these parents did what they thought was best for them and their personal situation. I feel I can respect their decision and still disagree with it.

Through SHARE, I was able to find other parents who had taken a child with anencephaly to term, Kelly from Bakersfield, CA, wrote to me. Missy from Chambersberg, PA, wrote to me. These women helped me through my pregnancy with Kristina as well as Kathleen with Reed.

All of the women mentioned have gone on to have healthy babies, No specific support group had existed for us so I started one - ABIDING HEARTS. It is currently helping many parents who continue nationwide. I believe society will never stop prenatal testing therefore it is important to know ALL of your options before making such an important and life changing decision.

ABIDING HEARTS is currently attaining non-profit status. It has voting members who have all continued their pregnancies. A newsletter is being drafted and funding sought to continue giving help to suffering parents, families and friends.

Kathleen and I are working with parents and friends to make sure no one else feels as lonely as we did on our journeys to know and meet our children.