Victory in Christ
October 24, 1994 - October 24, 1994
Anencephaly
Dear Mom & Dad,
I'm so sorry that you have found out some heartbreaking news about your baby. We found out at 20 weeks that our baby had anencephaly, a neural tube defect resulting in a severely underdeveloped brain and skull. Up to that point, my pregnancy had been routine, and with a healthy 18-month-old son, we expected another healthy baby. We opted to carry our daughter, Victoria, to 38 weeks gestation. Then she was delivered by c-section, so that her chances of surviving birth would increase. She lived for almost 12 hours and was held and loved every moment of her life.
The time from when we found out that our baby would not live long if she survived birth until her birth was difficult. It is hard to appear to carry a baby that you will take home and love for many years when you know something is wrong with that little life. Many people who don't know your situation will make thoughtless comments, and it seems that those who do know just don't know what to say. Looking back, I wish I had let myself become more attached to Victoria before she was born, because we had so little time after her birth. For me, it was especially difficult to be around friends who were due the same time I was. Now, when I see their babies, it is still heartbreaking to think about what Victoria might have been like if only that one little tube had closed at the right time.
I asked a friend to write lots of loss organizations for information and have it sent to her house. That way, I could look at things when I wanted to, and not dread getting sad mail every day. She organized everything she received according to when we would need it and helped me write a birth/care plan for Victoria so we would do just what we wanted.
It was very important to us to have lots of tangible memories of Victoria. We let our church family know about our baby's problem right away, so we received many cards and notes during the last four months of my pregnancy and for about a month after she was born. We also took lots of pictures and videotape. We met with someone who edits videotape professionally and put together a ten-minute tape with highlights of her life. We also saved a lock of her hair, and her ring, clothes, blanket, stuffed rabbit and other little treasures. We even saved a "preemie" diaper" since she only weighed 4 pounds, 10 1/2 ounces. Many of her things were gifts from friends. I actually told one of our friends some things that we would like, such as a special blanket. We also wanted typical "It's a girl" stuff. I was really glad that I told my friend that because I wanted the fact that we had a daughter, even for a short time, to be recognized. Your friends probably won't know what you want as far as gifts. Tell them and you'll have lots of special treasures to remember your baby.
We did not make funeral arrangements in advance. The day after Victoria died, her daddy went out to a couple of cemeteries to look at the baby section and told me which one he thought was best, which was fine for us. The funeral director came to the hospital to make the arrangements, and we had a small graveside service with about ten friends and my mother. My mom and I put together a flower arrangement for the top of Victoria's casket with all those pink carnations I received while I was in the hospital. We did not have a memorial service at the time, but about six weeks later, our pastor showed the videotape we had put together to the congregation.
Now, almost six months later, the pain has lessened but I still have times that I miss Victoria intensely. Since we have a two year old, I am around moms with babies and young children a lot and their complaints about teething and sleepless nights are trivial to me now. After you lose a baby, I don't think you can ever feel the same about the miracle of a healthy baby again. If you want to write or talk, or need more information about anencephaly, let me know. Again, I am sorry about your sweet baby.
Love,
Dionne Merriott