Congratulations! You are pregnant! Wonderful news! Right? Unless you are like me. Unless you have a feeling something is very wrong with your baby. Unless you are afraid that perhaps your baby might die. Unless you have an unsettling feeling, deep down inside, that just will not be quieted.
I had no idea my baby had Down Syndrome until after he was born. The birth itself was magnificent, a V~Bac against doctor’s orders. I felt powerful and strong and pushed out in the wee small hours, our son, Jack. The first sign of trouble came when the nurse blurted out “He’s rather grey” and our baby was suddenly whisked away. We knew, from the birth of our first child, that they would take him, weigh and measure him, bathe and swaddle him and soon he would be returned. A long time passed. My husband and I waited, not really trepidatiously since we didn’t think there was anything wrong with him. He was full term and breathing…!! What else was there to worry about?
Eventually the doctor, my midwife and my doula returned to our room. “Shut that music off” insisted the doctor, and my peaceful classical music was abruptly silenced. We listened with mounting concern as the doctor asked “What did your first child’s nose look like when she was born?” I was stumped. Her nose? What did her NOSE look like? I had no idea what he was asking me, and no idea how to correctly respond. He began to blurt out that it would seem our son had been born with Down Syndrome. We were shocked, to say the least. I DO remember however, saying “OH!!! Is THAT all?!!?”
Throughout my pregnancy I had feared something was not right. I remember I had seen a commercial, an insurance one I think, that featured a father and son sitting at the breakfast table. The father was reading his newspaper by holding it up in front of his face and the son was similarly reading the comics. The son lowered his paper to perhaps flick Cheerios at his father (I forget the details now) and the boy had Down Syndrome. A voiceover asked “Have you MetLife recently?” This commercial stuck with me for some reason, all through my pregnancy, and although I didn’t realize why at the time, it made sense on reflection. Somehow I already knew. I had felt that something was wrong, but had feared he would die. To discover he “merely” had Down Syndrome was something of a relief.
This is not to say taking such news is easy. For the next day or two our emotions would run the gamut of joy for the birth of our child, to grieving the loss of the child we didn’t have. We had no idea what Down Syndrome meant. We had no information, neither myself or my husband knew anyone with a Down Syndrome child – we had no idea what to expect. We were at our lowest. Oh certainly the hospital provided us with information, little leaflets, flyers, helpful handouts… we were overwhelmed. We could not take in the news, the paper was worthless as the words would not go in. The birth of a baby is an exhausting process and doesn’t simply end once a baby is born. We were still exhausted physically and now we were emotionally drained and mentally numb.
I was 30 years old when I had him. I didn’t think that put me at very much risk. It turns out 80% of children with Down Syndrome are born to women UNDER age 35. I had no idea. I was sure that such abnormalities occurred with “Advanced Maternal Age”. (I think now, 10 years later, you need to be young and fit to raise a son with Down Syndrome!) I was offered pre~natal screening but I refused it for three reasons. One, I knew there was a risk to the baby and had already suffered several miscarriages between my two children. I did not want to risk another. Two, I also knew there was a very high proportion of false results with these tests. I had heard of two friends who, pregnant at the same time, had the prescreening. One woman tested positive for Down Syndrome in her baby and the other tested negative. You can guess what I’m going to say, right? Yes. The one who tested positive ended up with a baby with no abnormalities and the one who tested negative gave birth to a child with Down Syndrome. Any test that is so unreliable is no test at all if you ask me. Finally I knew that no matter the results we would be having this baby anyway, so the test was a waste of time.
Our brains slowly began to wrap themselves around the idea that our son was going to be different. Life was going to be different. I was taken to the NICU (Neonatal Intensive Care Unit) where my son lay surrounded by monitors, an alarm strapped to his foot, a needle inserted in his head. I was exhausted, I still had not slept, and frankly, I was afraid. The nurses picked him up and handed him to me, as I held him a monitor slid from his foot and a shrill alarm began to sound. I wept as I cried “I can’t DO this” I didn’t want THIS baby…. I wanted THAT baby. The “normal” baby I could see laying, wire and alarm free, sleeping soundly in his bassinet. This was my lowest moment. What finally brought me round, what opened my eyes and helped me see clearly was actually a call from my father. Miles away across the sea his words made everything right. They made sense. “Well,” he said, “He’s just a little boy who wants to be loved.”
He was. My son. Jack.