Tuesday, January 11, 2011
We knew something was wrong as early as week ten. We had tests done that week and they told us our baby looked like it may have spina bifida. The next week we had more extensive tests done to confirm the diagnosis. I can recall the day that we got the phone call so vividly in my mind even now. (It was the thirteenth gestational week.) "The amniocentesis confirms that your baby has a genetic disorder called Triploidy." I asked what that meant and was told that I needed to make an appointment to speak to the genetic counsellor for further information.
We had to wait two weeks for the appointment. Here's a summary of the information we received from a very kind and understanding genetic counsellor. (This information can be found here.) "Every cell in the human body has 46 chromosomes; 23 that were given by the mother, and 23 given by the father. The only cells that do not contain 46 chromosomes are the egg and sperm. These two cells each contain 23 chromosomes, which combine at conception to form the two sets that are compatible with life. A triploidy occurs when there are three sets of chromosomes; normally there are only 2 sets present. When conception occurs, the 23 pairs of chromosomes combine to create life. Of the 23 pairs, 22 are autosomes (non-sex chromosomes) and 1 pair is for sex- determination. Females have 2 "X" chromosomes, shown as a 46XX, and males have 1 "X" and 1 "Y" chromosome, or a 46XY. In a triploidy, you can have a 69XXX, 69XXY, or a 69XYY, depending on the way the triploidy occurred." We had a 69XXX, a little girl.
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"Triploidy occurs in approximately 2% of pregnancies, and is most often associated with first trimester spontaneous miscarriages. Because these miscarriages often go undiagnosed, most doctors believe that the actual incidence of triploidy is much higher than any studies have shown. Triploidy is an accidental occurrence, and is not caused by anything that either parent could have controlled. One fact that we held onto was that the incidence of triploidytriploidy."
"There are a number of birth defects that are associated with triploidy, but they vary widely from case to case. Included in these are syndactaly of the fingers and toes, heart defects, neural tube defects, small head, hydrocephalus, cleft lip, kidney malformation and abdominal defects. Often the fetus measures smaller than the gestational age, as was the case in our situation. the longest reported survival was 10 months." This is the part that nearly caused my heart to skip a beat: "Triploidy is not compatible with life." The counsellor discussed the possibility of terminating the pregnancy, but for us that was not an option since we believe that life begins at conception. We decided to wait and see. The next few months were very difficult for us. We researched all we could about Triploidy and tried to understand the diagnosis. We prayed a lot! We depended on Jesus for strength because we had none. This was especially hard for my family because my older sister lost a baby at 19 weeks. We had been through this type of loss and did not want to go through it again.
The hardest part about the whole thing was that I had to go to my OBGYN weekly to be monitored. I would go in and the Nurse Practitioner would say, "so you are still pregnant?" I KNOW she did not mean it like it sounded and yes, I was very sensitive during that time, but it smarted every time. We did not look at the pregnancy as a burden we had to carry. We were not waiting for our baby to die. We were hoping to see her live. We knew she would not live long if she did live, but we longed for just a few minutes with her.
Weeks and weeks passed and she was still alive. I would look at her every week on the ultrasound and smile. She had a strong heartbeat and she looked very normal. I secretly was hoping, dreaming that the doctors were wrong in their assessment and my baby would be fine. I was wrong.
It was gestational week thirty-five. We went to the appointment and the nurse could not find the baby's heartbeat. We went to have an ultrasound and with tear-filled eyes, the nurse told me our little girl had "passed". I cannot describe to you how I felt at that moment. For months I thought I had been preparing my heart for that day, but I learned then that you can never be prepared for death. Death comes and no one can restrain it. The baby needed to come out of my body and my doctor was going away for the weekend, so I had to wait two days to be have the baby.
Two days later I was admitted to the hospital. I was going to be induced. I would like to tell you about a wonderful thing God did for me that day. He sent to me the most wonderful nurse I have ever met. Her name was Angie. Angie treated me with such care and concern that my hard day was not so hard. When our little girl was stillborn, Angie cried just as much as anyone else and that really touched my heart. This stranger cared about my hurt. (A few years later when I was going to have my son, I prayed for Angie to be my nurse...guess what? God answered that prayer and I got to be reacquainted with this dear woman!) God used Angie that day to bind some of the wounds of my heart.
We buried our child two days later. So many people came out to show their support to us and we were so touched and blessed. We knew God had been good to us and so we decided to name our little girl Joy. It brought joy to our hearts to know that she had been ushered into Heaven and was at that moment in the presence of our Lord. I know I shall see her again! I'm looking forward to the day when I meet the child known only to God.