I have read many stories of families that have an Autistic child and they always tell the story of when they first became aware that something was different with their child. For many, they say that it was after one particular series of vaccinations. Many others noticed a difference after an introduction of certain types of food product(s). The truth is, no one knows yet for sure what causes Autism and for each family it’s different. Each family’s story is unique. For us, I noticed right away and I videotaped much of Morgan’s first days and months when he came home from the hospital. I wanted to document what I was witnessing and to share with others (family and professionals) to better understand this. After all it was 1993, and Autism just wasn’t known outside the circles of families living with it. I had certainly never heard of it.
My first memory that something might be different with my son was on the first few days after he came home from the hospital, when I would feed him. I couldn’t breast-feed him and I will explain why in a moment. I would sit cross-legged on our bed and cuddle him tightly to me and rock him all the while he fed; my goal was to simulate the same position as if I were breast-feeding to create that same type of bond between us.
I noticed right away that he reacted differently than my first child did. She would always lean in, snuggling closer and often place her tiny little hand on my chest. It’s one of my favorite firsts ‘most tender moment’ with this wonderful new little life I’d just given birth to. However, Morgan didn’t do either of these things. As a mater of fact, he would actually try to turn away, lean away from me, almost as if he was trying to break the bond of closeness. It wasn’t that he wasn’t hungry, he was, and he continued to drink his bottle all the while, but it just seemed that he didn’t want the closeness. Looking back and knowing all that I’ve learned now, I can’t help but think maybe it hurt him to be snuggled so closely, I will never know for sure, but in many ways this knowledge hurts me a lot. Anyway, this is when I first noticed a difference and I also started to watch my little man very closely for any other signs that I could take to the doctor to explain what I felt was somehow different.
Now I will tell you of Morgan’s incredible birth. I didn’t mention it first because I don’t want you to think this is the reason he is Autistic… I assure you, it’s not. So, with that being said, I will tell you about one sunny July morning when I was 28 weeks pregnant with my second child, having my breakfast and taking note of what a beautiful sunny morning it was outside my kitchen window; when my water broke.
My brother was living with us at the time. He was the only other adult at home with a vehicle and it took much convincing that I truly needed a ride to the hospital. He just couldn’t believe it, thought I was mistaken and didn’t want to waste his time and gas going up there only to have to turn around and come right back because he was sure it was a false alarm. But I was certain and convincing; he finally agreed to drive me the 10 miles to the emergency room. Once there, the doctors did an exam and agreed my water had indeed broke and my labor had begun. But it’s way too, too soon I wanted to scream. However, I knew I needed to stay calm and listen to what the doctors were saying if we were to have any chance of saving my baby’s life at such an early stage. They didn’t have the facilities to care for such a premature birth, so the decision was made to send us, by ambulance, another 20 miles to Emanuel Hospital in Portland, OR. which specializes in this type of case.
Once I was emitted to Emanuel hospital, the first thing the doctors did was to give me this absolutely horrible medicine called nifedipine through my intravenous (IV) tube, which was to stop my contractions. It’s not known to cause any problems for the baby, however it gave me a rash all over my body, headaches, nausea, dizziness; just an overall feeling of illness. I was also given a steroid drug called a corticosteroid to help quickly develop my baby’s premature lungs; since the lungs are one of the last things to mature in the womb. The plan now was to try to stop the birth for as long as possible. Well, it was the most miserable 4 weeks of my life. Stuck in that hospital bed, feet up in the air, head down and the awful, awful medicine stopping the contractions. But those weeks are what probably saved his life.
On August 22, 1993, at 32 weeks gestation, they could no longer stop the contractions and allowed my son to enter the world. Now what happened next, I should have sued the whole hospital and it’s very lucky for them that I’m not that type of person. Anyway, you would think that after 4 weeks of waiting and preparing for anything and everything that might or could go wrong, that all these doctors (it was a teaching hospital, i.e. I saw many, many doctors each day) surely would be on their game…. WRONG. Problems began during the birth and on the monitoring they could see that the baby and I were in distress. One of us was bleeding a whole heck of a lot, so they finally went in and got the baby out very quickly. For the first 20 minutes of his life, they didn’t think they could save him and I wasn’t allowed to see him. I found out afterwards (here comes the stupid part) that Morgan had lost a pint of blood (why couldn’t they have figured that out much sooner and stopped it). He was without oxygen in my womb for several minutes – they said they just didn’t know (WHY NOT!). Again, weeks and weeks to prepare, dozens of monitors and instruments and they COULDN’T EVEN TELL WHO OR WHAT WAS IN DISTRESS! It was determined later that the umbilical cord had come loose from the lining of my stomach and this is what started the trouble. After 4 weeks of medicines like nifedipine and the steroids and the fact that my water had broke weeks earlier all contributed to the cord weakening and starting to dry up as it began to die, it became detached. Again, you would have thought they should have been prepared for even this. I can’t believe I’m the first person that this happened to and with everything else that had happened so far, one would think that we might have considered this as one of the possible risks and prepare for…. a duh, ya know, just in case. They had the nerve to ask me if I’d been taking anything that could have caused this… and of course, they even tested the cord and afterbirth to be certain I wasn’t lying…. Hell, I’d been basically strapped upside down in a hospital bed and pregnant for the last 4 weeks! It’s a good thing I didn’t own a gun at that moment. The tests all proved I’d nothing bad or wrong during my pregnancy to endanger my baby, just like I said.
His Apgar was less than 1 for the first 20 minutes, but they got blood into him (God Bless blood donors) and the steroids had done their job; his lungs began to work with the oxygen they gave him and he finally, after 20 minutes began to pulled through. For those that don’t know, an Apgar score is from 1 to 10 and is how a doctor grades the overall health of a newborn, with 10 being perfect.
The first time I was able to see him, he was covered with IV needles, tubes and wires going everywhere…. in his arms, legs, stomach and even his bald little head. He weighed 5pds 3ozs. For being 8 weeks early, this was a really, really good weight and helped considerably in his first minutes, hours and days in his fight for life. It was the strangest feeling I’d ever had… such joy upon seeing him and such pain and incredible sadness at all that he’d already been though and what he looked like just then. I have a picture of this and his 6-yr-old sister is standing at the side of the incubator peering in at him with her eyes as big as saucers. Somehow, sometime I knew right then I was going to have to explain to her that this isn’t what you would normally see and experience when viewing a newborn baby. Did I do the right thing by letting her see him right after he was stabilized and those first few weeks of his life? I still like to think yes; I wanted her to meet and know anything about her brother, just in case the unthinkable did happen and he was to leave us. To this day, she’s not sure she wants any children.
For the next six weeks he stayed in intense care with me by his side every day. When you first get there and before you can go in, you had to scrub down with surgeons soap and put on a surgical-looking gown to protect all the little ones from outside germs. I would then go in and walk by all the other little, very little babies in incubators all neatly lined up in rows with all the monitors and machines by their little beds. I had come to recognize one little one and his/her incubator; with all the beautiful and brightly colored balloons because this is where I would turn left and go down to the end to spend time with Morgan. One day I asked our nurse about her/him because I never saw any parents or anyone else around, just the beautiful balloons and teddy bears, etc. She just looked at me sadly and shook her head. It was forbidden to talk about any of the other babies and their families, but the sad look on her face said more to me than words ever could have.
Morgan improved each day. Most of the needles, monitoring wires and his feeding tubes were now gone and he didn’t even need the special lights for jaundice anymore. One day I came in as usual, scrubbed and then walked down to the row where I should turn left and….. nothing. It was an empty space. Where was he/she? I knew it was impossible that he/she had gone home because he/she was no larger than a Barbie doll, actually looked just like one lying in the incubator and this baby had so very many tubes and machines around at all times. I got a knot in my stomach and I quickly walked down to where Morgan was and I quietly spoke in a hurried voice to our nurse, “Where is the little baby down on the end?” She just looked at me sadly and shook her head. I thought, Oh God No! I felt as if I’d just lost one of my own; I cried all that day and I held Morgan a little tighter and closer to me. After that, I tried not to look around and notice anything or anyone else other than Morgan. I prayed daily for us to go home soon.
He finally came home at what would have been 38 weeks gestation; still 2 weeks ahead of when he should have came into the world. He had improved steadily each day – I was so proud of him. I remember thinking; this little guy is going to be such a fighter, there won’t be anything he can’t do…. little did I know, our ‘fight’ hadn’t even begun.