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Our Little Jory

By Jory's Mothers

I will never forget the moment I found out I was pregnant with our first child. There I was, sitting in the washroom looking at two pink lines on a stick. I did not have to wait the three minutes — the stripe appeared instantly. I just smiled and walked on air the whole morning. My husband had worked late the night before and I wanted to tell him when he was coherent. When he finally did wake up I told him "we're going to be parents" and we hugged, laughed and cried tears of joy. We were newlyweds and I was 24 years old. We were both surprised to get pregnant the first month of trying. We had assumed it would take a little while.

Originally, I had wanted to wait for the "iffy" first trimester to be behind us before we shared our news but we just couldn't put a cap on our joy. Everyone knew we were expecting and I was only two months along, it was November 1999.

I felt great during my pregnancy — I had no morning sickness and was just a bit tired. I craved pregnancy information amd read as many pregnancy books as I could get my hands on. I diligently watched A Baby Story daily. I was especially excited about the ultrasound which my doctor had forgotten to book for the usual 18-week mark. She got me in at 21 weeks but she said that would be fine. I was so excited that February morning for my u/s that I actually drove to the building beforehand so that we wouldn't end up being late and missing it. My husband took the day off work to see the baby and we had decided not to find out the sex. We wanted to be surprised.

The ultrasound started off great. The technician measured the baby's limbs and we saw a very clear view of a foot and five little toes. Then he pointed out the heart and the perfectly formed four chambers. Then he began with the head measurements and asked me if I was sure of my due date. I assured him that I was correct and he grew quiet. Then he went to another room and asked us to hang around for a few minutes. I assumed the u/s was done and that things were okay. Then a doctor came in and asked me to lay down again, saying he needed to take a few more pictures. I had never been through an u/s before but this did not seem normal to me. When the doctor was finished he asked me who my physician was and I told him her name but that she was on holidays for a couple of weeks. He said fine and sent us on our way. I left feeling uneasy but assured myself that everything must be okay. My husband and I then went to a furniture store and purchased a rocking chair to celebrate seeing our baby for the first time.

The next morning I received a phone call from a doctor's office that I was not familiar with. I said there must be a mistake and the voice on the phone said that this doctor was an OB and was I pregnant. I said yes and she told me to go in the day after next. I couldn't wait that long to find out what was going on. I asked her what this was regarding and she couldn't tell me a thing. I then called the radiology office that had done my u/s and demanded someone tell me what was going on. The doctor who spoke to me told me that my baby had hydrocephalus. I said "what does this mean — death, mental retardation, what?" He told me that there was a surgery for this condition and many kids are just fine. I hung up very upset but still had hope. That night my husband and I went to the library and researched hydrocephalus but there really wasn't much on intrauterine treatments.

Two days later we went to see the OB, who told us that the baby probably had spina bifida but that we needed to go to Calgary for our prenatal care from that point on (it is a two hour drive from where we live). He also said that intrauterine surgery was not an option as past attempts in the early '90s had not been successful. There went my hope. To top it off we couldn't get in to see the specialist in Calgary for another week! The OB assured us time was not of the essence and never even mentioned the possibility of termination. I was almost 22 weeks along.

To this day, I have no idea how I survived that week. However, once I got to Calgary I found the doctors and nurses far more knowledgeable and compassionate. I had a more extensive u/s done and the next day met with two doctors who went over the diagnosis and our options with us. Our baby had severe isolated hydrocephalus (there was no spina bifida) and at the very least would be moderately mentally and physically handicapped but if the condition continued to progress at the current rate the baby may not even make it to term. We had the option of inducing labour up to 24 weeks or we could deliver by c-section (the head would be too large for vaginal delivery) around seven months, and our baby could have surgery and a shunt inserted to drain the fluid from the brain. The surgery would stop any further progression but would not be able to reverse damage already done. My husband and I talked it over and decided to terminate. I work with the mentally handicapped and know all too well the social, emotional and physical pain they go through. I did not want that for my baby, my husband, myself or our future children.

We were then sent for an amnio and then to a hotel and were told the labour and delivery ward would phone us there when they could start the induction. We waited there two days. I had just started to feel the baby kick and I felt a pang of guilt with every movement. The first evening I called the hospital and they said they were currently very busy at labour and delivery and we needed to wait. The second evening I phoned the hospital almost hysterical and they told me to come in. They had misplaced my paperwork and hadn't known to contact me.

I was now 23 and a half weeks. We had to get things started. Upon arriving at the hospital I put on a gown and a doctor I had never before met inserted a tablet called cytotec into my vagina. They repeated this every four hours for two full days. A different doctor inserting the tablet at each shift change. Finally, in the middle of the night on the third day the contractions began. They were very intense but within about a half hour of them coming on I was told to push. My best friend and my husband were on either side of me encouraging me to push. I just cried out in physical and emotional pain. I didn't want to push. It was to early. I didn't want my baby to die. However, it only took one push and my little boy was born. Our little Jory. The nurse cut the cord, wiped and swaddled him and then handed him to me. I was so amazed at how normal he looked. I never would have known anything was the matter. He squirmed and kicked a bit but passed only a few moments later in my arms. I touched every bit of him and kissed him and then let my husband hold him. After a while we called the nurse to come get him. I am not sure why but I assumed we wouldn't be allowed to have him with us for long. I wish I would have kept him with us longer. I will always regret that. Then the nurse came and took our little boy away and we never saw him again. It was March 5, 2000.

It has been five years now and I have two healthy little girls who are 4-years and 18-months old. Both pregnancies seemed to take years and I of course was paranoid of problems. We were given a 3-5% recurrence risk but that really did not mean much to me. I had to have u/s at 18, 24 and 32 weeks as hydrocephalus can occur at any given time in a pregnancy. Each and every u/s was a true test of faith. But, thank heavens all was well with the girls. They know they have a big brother in heaven and when they are older I will be open with them as to why. I made a decision based on love for him, and the rest of our family. I would make the same decision again if I had too. I do pray that my little Jory forgives and understands that his Mommy did what she thought was best. I will always love and miss him. He is imprinted on my heart. I look forward to the day we will meet again.