This is a guest post by Stephanie Arzi, who describes herself as a Church member, social worker and the author of “High risk pregnancy and foetal diagnosis; your journey.”
My name is Stephanie and I am a convert to the church which I joined at almost 20. Having children and raising a family had always been one of my great wishes. In 2002, my husband and I had decided to have another baby with the other two we had. This was just before Christmas. I remember taking my temperature and telling my husband the ‘day’ would be January 8. Indeed it was, and I waited a couple of weeks before doing a pregnancy test at my doctor’s. I remember having mixed feelings and couldn’t quite pinpoint why.
I was really excited to have the 18-week scan done. I guess our main concern was to decide whether or not we should ask the sex of the baby. Over the course of the ultrasound, I had three different doctors looking at the baby, and I assumed they were not very good at working their machines. It never occurred to me that my baby could be sick. No, not my baby, I was a healthy 25-year-old with two previous perfect pregnancies; how could anything be wrong with my baby? I remember sitting in a small office wondering what kind of problems my baby could have? An extra finger? Down syndrome? What kind of operation would she need? The doctor was really sorry and announced that my baby had some kidney disease and would die at birth, if she even survived until then. Then, I don’t really remember what happened.
I know I saw at least three doctors who all told me different things and was given many choices but I left knowing I had to come back the next day to see a genetic counsellor and discuss a termination. The next night was endless. Nobody around us could understand what the “big fuss was about. It was only a fetus; an abortion was the best thing to do for all of us. We could try again; we had other children…” I was devastated. My baby was alive and I loved her, I couldn’t contemplate having a termination, just because some doctors I had never met thought she had a kidney disease… My beliefs as an LDS member were sound and clear. This was my baby, sent to me for a purpose and I would find out what that purpose was.
We decided to go on with the pregnancy. The pregnancy was happy enough. We told our children that the baby was sick, that her body was broken but that her spirit was really happy and special and that she would go and live with Jesus. They seemed content with that. On August 13 2002 early in the morning and after two days of unexplained contractions at only 34 weeks gestation, Talina was born in our home. She lived for an hour before she fell asleep in my arms.
I became extremely curious as to why I had seen and read so many information packs about prenatal testing in libraries, bookshops and doctors’ surgeries and none at all on carrying a child with an abnormality despite the fact that this affects three per cent of pregnant women every year worldwide. I began to realize that there was a taboo surrounding long-term or fatal diagnoses in our society. About 6 months after Talina’s birth and death, I developed, with my sister Caroline, a website for families who were going through such a pregnancy and launched a support group named “Families Forever” which can be found at www.stephanieazri.com.
After much praying and reflecting, I felt that I may be able to provide support for families by writing a book for parents currently expecting a baby with a poor diagnosis. And so I did write that book. “High Risk Pregnancy and Foetal Diagnosis; your journey” was published by Free Association Books in 2006. High-risk pregnancy and foetal diagnosis: your journey was intended as a practical, useful and supportive guide for parents who found themselves confronted with a poor prenatal diagnosis and a resource for professionals in the field. It outlined the common issues, questions, and options families may have. And finally it also had spiritual and strengthening accounts of women who went through this experience, both who terminated and carried to term.
I no longer wonder what Talina’s purpose was. I know she was sent to me so I could use this trial to help my brothers and sisters through their own experiences. I acknowledge as an LDS clinical social worker that prenatal diagnosis issues are misunderstood by our society. Families who receive a prenatal diagnosis love their babies already; they are devastated whichever option they chose and the impact of this diagnosis will remain with them for the remainder of their lives. As a whole church, we can make a difference by supporting and acknowledging our sisters who have received a prenatal diagnosis and refer them to appropriate resources and support groups. To parents who have lost a baby, I hope you find the support that you need, and know that you will always be welcome in our support group.