Joyce Stover

New York, Canada

What is the one word that describes you? Hopeful

My Son: The Story of His Birth, Diagnosis and Surgery

Alex's was the easiest pregnancy. His sisters, although active youngsters, were in the capable hands of a Philippino nanny. I spent the later months of our pregnancy embroidering a confirmation dress. Life was yards of white cotton, pastel threads and music on the stereo. It was a very dreamy time for me, peaceful.

One of the last visits with the ob-gyn, he frowned. Ever sensitive to every nuance I asked what was wrong. Nothing but a slightly lowered heartbeat, but nothing to worry about. Labour had to be induced, my body never did want to expel my children. Susan was the only one who took matters into her own hands and popped out on her own.

They tried first with a Foley Catheter (don't ask, you don't want to know about a rubber tube up your bottom all night), but finally started the drip. Labour was easy and he was my tiniest baby (at 6 lb. 7 oz.) and as the nurse took him to clean him up she exclaims, "He has stars in his eyes!" Sure enough, his bright blue eyes had spots of white around the iris. I later learned that these are called "Brushfield" spots, but stars in his eyes sounds a whole lot better. Closer scrutiny showed he had elfin ears, folded over at the top. He had an APGAR of 8 so I wasn't worried at all.

Then came the nurse on her first rounds with me and Alex on the ward. She had students with her and I thought she was just being dramatic when she checked Alex's pulse against her watch, frowned, and took Alex away.

What came next what a nightmare of diagnostic tests and superoxygenated incubators. My baby wasn't getting enough oxygen into his system. They didn't know why. A nurse took him to Hotel Dieu (I was at Windsor Western at the time) for a CAT scan and finally a primary diagnosis - Alex's heart had a "hole" in it; it hadn't completely formed and was I familiar with the term 'Down's Syndrome".

I didn't cry until I got back to my hospital room. But to give credit where credit's due, it wasn't two minutes before there was a nurse there, holding my hand and telling me her story of her son, who was born with Downs but did not survive beyond the second year due to bowel obstruction. She gave me a book.

What came next was the hardest. I had to tell Danny. I had borne him a son and that son, in my mind, at that time, was imperfect. As always, Danny wanted the diagnostic facts and remained "optimistic" which to my mind was "in denial". Because I knew the diagnosis was correct - the eyes, the ears, the slight tilt to the eye, the little button nose that they described as "pushed in faceplate". Blood work would not render definitive diagnosis for 13 weeks. And we had work to do.

We introduced him to his sisters. They knew what Downs was - James was at their school and was around 7 (the girls were 3, 5 and 8). Susan's only and biggest concern was that he would not be able to talk to her. Unfortunately, that has indeed become the case, but they communicate just fine.

We come home, but there's a round of appointments with the paediatric cardiologist in London and referral to Sick Kids in Toronto. Alex is nursing well, and the girls are absolutely in love with him. He is the best baby in the world - beautiful to look at with his bright blue eyes, fair hair and peachy skin. We can't get enough of him. It was like a spell had been cast on our household. In my earliest 30's, twin sisters in their 50's (mother and aunt of a friend), divined that I would have three children, a pause, and another of another sex. This was spooky because I had had a dream earlier that I had three boys and a special, fey, little girl. Got the sexes wrong, but everything else worked out.

Alex was born January 19th and surgery on his heart was scheduled for early June. Nanny moved on, so my dear Mother and saintly sister-in-law step in to take the girls for the week this happens. Susan still remembers the bunny rabbit cake she got for that birthday. Danny and I take Alex to Toronto and get a room at the Holiday Inn near City Hall. A number of hospitals furnish rooms to parents whose children are undergoing surgery.

I remember very little about the room except for the telephone and the fact that there were miles of good walking in that vicinity. The day of the operation, we are taken in hand by a lovely young woman by the name of Walters who explains, in comforting and careful detail, what will be happening to Alex and what to expect. I was upset by the fact that they had trouble finding a vein to do his blood work - he had never been hurt and it was making him cry. The technicians were crying too. Finally, I lay him in the kindly arms of the leprechaun who was to be the anaesthesiologist and Danny and I set out to walk the streets of the City. The surgery took 8 hours and we walked 6. Then we waited at NICU post op.

There was a young woman moaning to her mother, "Why did this have to happen to me?" I felt like slapping her face and telling her it wasn't happening to her, it was happening to her child but didn't because she was just a child herself.

Then it was time to see Alex. Pictures do not adequately prepare you to see your baby so close to death. It hovered in that room. There were tubes in and tubes out and there he lay, grey as death and just his chest rising and falling with the heart-lung machine. We turned to stone. Finally Walters gently takes me by the arms, draws me close and says: "It's ok to kiss him, you know?" That broke the spell and I was able to touch my son. Pray for everyone who had a child in this position. I can think of few things worse.

I had seen a "lactation consultant" before the surgery and she had furnished me with a nice electric breast pump and I had frozen a supply for Alex for use during his recovery. The hospital had special rooms where I could go and "express" milk and leave labeled in a refrigerator which they would in turn collect and put into his feeding tubes. My milk and drugs were all he got. They took great pains in letting me know the status of his meds and reassuring me that he felt no pain.

The second day, I asked to hold him in my arms and half an hour later, it seems, I was sitting in a large, wooden rocking chair with Alex in my arms and tubes draped over the armrests. I rocked that baby well. Six hours a day during visiting hours, I'd sit and rock, look out the window, listen to the soft music and wonder at the small dramas I saw playing all around me as babies came and went. Alex stayed. He developed a cold upon a cold and the congestion caused extubation failure a couple of times. Danny returned home with the girls, and I stayed on and rocked. My dearest friend, Deirdre, booked a Shiatsu massage for me when Alex was pronounced in the clear. He was successfully extubated (from the heart lung machine), catheters were removed, med lines resolved and he was ready to wake up.

My main concern at this time was that I could resume nursing. It had been more than a week. Had he forgotten how to suckle. When he latched on, I said a small prayer of thanks. It was clear at that point that he had suffered no pain from the experience - he nursed as if he had never quit. A couple of days in recovery (with me sleeping in the room, which is why I REALLY appreciated the massage) and Alex and I left the hospital.

Dr. Truesler was the surgeon in charge of Alex's operation. Tall, handsome, white haired, I believe he was a pioneer in this kind of operation. He was displeased that he had not managed a perfect repair. The mitral valve still leaked (sounds kind of like a plumber, doesn't it?) but he thought that it would close with Alex's natural growth. Something that, indeed, has come to pass.

All through the conversation, Danny looks like a man in shock. He says little, we thank the doctor with all our hearts and he leaves the room. Danny turns to me and says: "That man is the exact physiotype as my father!" In other words, he was a dead ringer for his dad. It surprised him speechless.

There has been no looking back - no meds, no abnormalities, no cyanosis. Alex is no different from the rest of us - except maybe a bit cooler.