Sidney's story is painfully short. But he existed, he lived, and his story deserves to be told.
When our oldest son Devon, who had SMA Type 1, was eleven months old, Steve and I were visiting my mother in Missouri, when it occurred to me that I was over-due, and I thought "hmm". I sneaked out of the house and went to find a pregnancy test. A few hours later, when I took it, there it was-a Plus sign! At first I just stared at that, and I felt a welling of joy in my heart. I called Steve in and showed him, and then I ran into the other room and showed my mom. We told Devon he was going to be a big brother soon, and I felt so hopeful for our second child.
In just a matter of days, however, I started having terrible fears, bad dreams. We had to wait until 10 weeks gestation before we could test for SMA, and that was a horribly long ten weeks. This time passed agonizingly slowly. At night, during that time when you are not asleep but not yet awake, and your mind wanders to wherever it chooses, all I dreamed about was the day I would get the phone call...and it always started off with "I'm Sorry".
About 5 weeks into the pregnancy, Devon went into Riley Hospital in Indianapolis with complications with SMA. Two weeks later, he died in my arms. The day Devon died was the first time I experienced morning sickness, and from that day until the day Sidney died, I was sick every meal, every day. I couldn't eat, I couldn't sleep, I had to quit working. My mind wouldn't stop spinning into what was I going to do if this baby had SMA too???
Finally the day came, and the CVS test was done. I got to see him on ultrasound for the first time, and he was just jumping all over the place! He was a wild child! I thought "Surely, he will be okay..." Now began the worst of the wait-waiting for the results. I could barely function by now. I don't even hardly remember this time. My memories are fogged by grief from the death of my son, fear for the life of the baby I was carrying, and terrible "morning" sickness that lasted all day. A week later I had another ultrasound to be sure that the procedure didn't hurt the baby. This time he was sleeping with his arms up over his head-just like his brother Devon and I often sleep! Then finally, about 12 days later, came the first call. "Laura, this is Jenny from the Genetics Lab. You have a little boy, and his chromosomes are all just fine! But we don't know about SMA because your test cells have been contaminated by your genes. We will have to have you come in for an amniocentesis to test for SMA."
Oh, man, that was awful. The waiting was supposed to be over, but instead it was starting all over again! But now we knew he was a boy, so we named him Sidney Houghton Stants. "SHS" so he would share his father's initials, and "Houghton" after my grandmother's maiden name. I went in for the amnio, and just stared at him on ultrasound the whole time. Watching my baby, praying that he was okay. Again, he was doing flips in there, jumping all over the place. He was such fun to watch! A week later I had the follow-up ultrasound, and this time he was asleep, sucking his thumb. All was well. It was the last time I would see Sidney in the womb.
The nightmares continued, the fears continued. Every conversation I had with Steve concentrated on Sidney having SMA. I knew. In my mother's heart, I knew. I had no peace, no joy. Just fear and sickness and desperation. I started cramping, I started bleeding. I went to the doctor who told me to go home and rest. When I walked in the door at home, there was a message on our answering machine from the Genetics Lab. My fingers were shaking as I dialed the number. I'll never forget what she said:
"Laura, this is Jenny. Um, we have the test results back. I'm sorry, but he is affected." I could barely hear her because of the roaring sound of the blood rushing through my head. Then I couldn't concentrate well enough to figure out if "affected" was good or bad. I was thinking "positive" or "negative" and "affected" threw me for a loop believe it or not. Finally I got it. As long as nobody said it, maybe it wasn't true. Maybe Sidney would really be okay. I had known, but still, until it is confirmed, you hope. I sat on the couch and I just cried and cried. Finally I called Steve and told him that Sidney had SMA. There was dead silence on the other end of the phone. Neither of us knew what to do, what to say. Our whole world, what had been left of it, had just been shattered all over again.
The pregnancy continued to be troubled. Just a few days after the test results, I was in the hospital in Indianapolis in labor. The doctors gave us the choice of medication to try to stop the labor, or not. After more tears and discussions that you can know, we chose to let my body take it's course. I was in labor for 24 hours before my water broke. The moment that happened, I burst into tears, because I knew that it was too late, that Sidney was going to be born, and that he wasn't going to be able to survive. I cried like I hadn't cried up until then.
Two days into labor, nothing was progressing, but the water was already broken. The nurses came in and said "I can't believe you are not asking for pain relief!"
In my mother's heart, I know what it is. My body was trying to hold on to my baby; every fiber in my being screamed to protect him, and I knew that as long as he was in my body, he was "safe". I couldn't let him be born, but I couldn't let him die. Imagine that, all you parents. How would you like to know that the only way to protect your child from a prolonged death would be for them to die early and quickly? We had just buried Devon 2 months earlier, and here we were again facing the death of a child. I couldn't let him go.
I became ill, shaking with cold. My joints ached so badly I could hardly move. I kept throwing up. Every 3 hours someone came in to do a cervical check. It got to the point where those checks were the most painful thing that I had ever encountered. At one point I came up off the bed almost screaming, and I asked the doctor to please stop. I was pushing his hand away and asking him to stop, but he didn't. That is something I've never done before, and is very un-like me. I generally have a high pain tolerance, but that felt like it was killing me! Steve left the room with him, and from what I hear, told him or the nurses that he didn't want to see that doctor in my room again-because if I said "Stop", I really needed him to stop. I never did see that doctor again!
My joints ached too badly to go to the bathroom, so they had to put in a catheter. They asked if I wanted pain medication, and I took it one time so that I could handle the next cervical check. The problem was, the pain killer left me feeling very drugged and out of control. I was asleep, and drugged, when my door opened, there were 6 people surrounding my bed, and the doctor manhandled me into position and just did the cervical check without a word or warning. Had I not been so doped up I would have smacked the person and ranted and raved at everyone involved, but I was too out of it. I was still furious, I just couldn't DO anything about it. Finally the drugs wore off. They had helped with the pain, true, but when they asked me if I wanted another dose, I refused it. My son was close to being born, and I was not going to face him in a drug-induced fog. I wanted to be clear and sharp, I wanted to remember every second, I didn't want the coward's way out of a painful situation. But mostly I wanted the pain. If my son had to die, it felt only fair that I hurt too. Like in some way I could take any pain from him. This wasn't supposed to be easy; my son was DYING. Why should it be easy for me?
I was in the middle of vomiting when I felt Sidney being born. We hit the nurses button, and when they said "What do you need?" Steve yelled "We're having a baby here!" They said "Hold on a moment" and finally made their way in. I couldn't see him right then, but they said that if he was born alive, it was only for a few brief minutes. We knew he had been alive right up to the time he was born because his foot had slipped out of my cervix and was off-colored from lack of oxygen...which meant he was still alive. The nurses cleaned him up for us, and brought him in to me to hold in a little blanket. He was the tiniest little boy, perfectly shaped, with fingers and toes smaller than matchsticks. He was no bigger than our hands. He was reddish-pink in color because he was so young, but he was there; a perfect little boy with all the perfect little boy parts.
We held him, we took pictures, we cried, we called the funeral director yet again to pick up one of our sons.
A few hours later, I was still feeling terrible. I was bleeding ferociously, and the placenta had not delivered yet. Steve was down in the cafeteria getting some supper, and my mother was with me. I was in pain, and for one of the first times in my life felt like I was just going to go nuts. I almost wished I would just pass out, or die. I couldn't get comfortable, and I just felt TERRIBLE. The doctor came in and checked me, went back out, got some forms he put in my hands (that I barely remember signing), and said they had to do a D&C, immediately. I was bleeding too much, and they needed to get the placenta out and stop the bleeding. I was very frightened and things kept happening too fast. They wheeled me into this sterile bright white room with lights all over, and discussed anesthesia in front of me. Finally the guy said "Should I start?" while he was poking around down there, and I said "NO! I can still feel that!" That is the last thing I remember. When I woke up, I had an oxygen prong in my nose, and Steve was sitting by my bed. The anesthesia they gave me did not knock me out, it just made it so that I wouldn't remember anything. And boy did it work! Apparently I had helped them move me from bed to bed, and had been asking non-stop for Steve. I have no memory of any of that. I don't like that by the way!
Looking at the oximeter attached to my finger was just too reminiscent of Devon. I couldn't stand it. I kept taking off the oxygen prong and trying to breathe without it, but I couldn't seem to breathe deeply enough to get enough oxygen in my lungs, so they kept coming in and putting it back in my nose. I hate things in my nose. So I kept pulling it out. A couple of times I watched my oxygen numbers dip into the 80's and below, and again thought of Devon. I almost wanted my oxygen levels to drop way too low, because I wanted to know how he felt. I wanted to know if it hurt. Thank God, it didn't, at least at the levels I got down to. I just felt warm and drowsy. That brought some comfort to me. Eventually I took it out for good and just did deep-breathing to keep up the levels.
Finally, around 2:30 a.m., they let us go home. I don't remember the drive, I don't remember sleeping. The next thing I do remember is getting dressed for yet another son's funeral. I remember standing by the graveside, where both our boys would be buried together. I remember the tiniest little coffin I have ever seen in my life. I remember the balloons that Steve's parents let off, and I remember crying the whole time behind my sunglasses. And I have no memory of anything for a week after that.
The next Sunday I was interviewed for the local Muscular Dystrophy Association's annual telethon. It was a week after I had buried one son, and only 2 months since I had buried the first. I was a zombie. I was articulate and the interview was fantastic-it won awards and everything. Why? Because I was too dead to care if I made a fool out of myself or not. I just wanted to tell my sons stories. I didn't care about anything at all. I felt as though I was nothing but skin covering emptiness. My hope was gone, my children were gone, there was nothing but death and sadness, and to survive I had to shut down anything inside of me that felt anything at all. I don't even think I faked it very well to others. And I don't remember when I started coming out of it, started feeling again.
Sidney's life was so short. He was only in this world for a few months, but he WAS in this world. He sucked his thumb, he danced around in the womb, he held his arms over his head while he slept, he lay in our arms for a time and was touched and hugged by us. He was loved and wanted and our precious son. As someone wise once said "no handprint is so small that it does not leave its mark on the world." Sidney made his mark-his handprint will always be in my heart. I have all confidence that he is indeed resting in God's hands, with his big brother Devon watching over him. I look forward to the day that I arrive in heaven to find two boys running towards me with arms open wide. In the meantime, it is my goal that people know he lived, he existed, and he was loved.