"So much has been given to me; I have no time to ponder that which has been denied." - Helen Keller
Looking back, Jack didn't move much during the pregnancy. I remember checking the criteria given to us by the OB/GYN, but he was moving the required number of times during an hour and the prenatal check-ups were going just fine, so we thought everything was okay.
When he was born, he scored well on his Apgars. A few hours after he was born, he had air caught in his stomach and they had to do a little procedure to suck it out, but we were told that happened sometimes. We didn't think much of his trouble nursing and we knew jaundice was common. So we thought once these little problems were cleared up, everything would be okay. We were just really happy to have him.
When Jack was a month old, I came across a picture of Matthew taken when he was 6 weeks old. His hands were in his mouth and his feet were pulled up high. Looking at the picture, it occurred to me that Jack couldn't even come close to doing that (with his arms or his legs), but I just thought "oh well, they change so much at this age, I'm sure in two weeks Jack will be doing the same." Two weeks came and went and Jack wasn't anywhere close to what I was seeing in that picture. Not wanting to believe there was anything wrong, and not knowing what could possibly be wrong, I tried to put it out of my head, but I also was laying Jack on his stomach trying to get him to lift that little head.
At his two month check-up the Child Health Practitioner asked if he was lifting his head. I told her no, but she really didn't seem to think much of it. She just said "oh well, we'll keep an eye on it." By three months he still wouldn't lift his head and my obsession with finding out what was going on, was growing. I found myself mentioning it to people, hoping someone would tell me a story about how they knew a baby that had done the same thing, but turned out fine. No one ever did. I got on the computer and started researching reasons for muscle weakness in infants.
I called the doctors office and told them I wanted to bring him in because he wasn't lifting his head. They told me it would be two weeks before I could see a doctor, because it wasn't an emergency. Funny - to me it was. I had to settle for an appointment with a Physicians Assistant, but I decided it would get me in the door and I wouldn't leave the building until I had some answers.
I went to the appointment and without even an examination, was given the standard lecture about how all babies are different and some develop more quickly than others. I persisted and found myself begging the PA to at least take a look at him. She finally gave in and told me to put him on the table on his stomach. When I did she said "so, he's like this because he has a cold." When I told her he could never move any more than that, she said "oh, well you do have reason to be concerned." She offered to handle the referral to the Neurology Department at Children's Hospital.
We were given an appointment 8 weeks out at Children's. I didn't know how I would bear to go 8 weeks with no clue about what was going on with our baby, but I had no choice (so I thought.) Thankfully, the PA at least gave us the phone number for the Child Find Coordinator for our school district. She came out and met our family, she evaluated Jack, and brought out other therapists to evaluate him as well. I was comforted because they all commented how bright and attentive he was. Looking back, I realize they did me such a favor, because although I'm sure they realized how serious his problem was, they focused on all of the good things about him.
Not getting any answers about what was wrong with him was driving me crazy. Every chance I had, I was on the computer searching the Internet with his symptoms looking for a possible diagnosis. The first time I came across Spinal Muscular Atrophy(SMA), I read it and thought "no, that's not it because these babies die." I don't think I was trying to fool myself, I think I just really didn't believe he was sick enough to die. He looked so healthy - other than the fact that he didn't move much.
After passing over SMA so many times, I finally decided to read it and pay attention to what it was saying. The more I read, the more frightened I became because all the pieces of the puzzle were fitting together. I started to panic and I couldn't read fast enough. I kept thinking I would come across something that would not make sense - something that I could say "Jack doesn't have this." But it never happened. I couldn't believe that I was reading that our baby might be dying. He seemed so healthy.
I went upstairs where Jack was laying on the bed and looked at his tummy. It was going up and down, just like they described in the symptoms. He was a tummy breather for sure. It was time for bed, but there was no way I could sleep - and neither could Jack. I stayed up with him most of the night and started to worry because his breathing seemed to be labored.
By morning, I was unable to function and couldn't do anything but cry. Matthew had ice skating that morning, but there was no way I could get out of bed and go. Mark stayed home and took Matthew to his lesson. I couldn't even think of how I was going to get through the day. I called a friend who thankfully offered to come over. I needed someone who could think for me and help me decide what to do. With her encouragement I called the doctor and explained Jack appeared to be having trouble breathing. They told me to take him to the emergency room at Children's Hospital.
We went to Children's hoping once again someone would say "he does not have SMA." I just wanted someone to tell me that I was missing something - that I was wrong - instead they said "you might be right." They took blood for a genetic screening and about two weeks later we were called in for his diagnosis.
The Diagnosis
On May 15, 1998 we had an appointment at the Muscle Clinic at Children's Hospital to receive Jack's diagnosis. I actually felt sorry for the doctor who had to give us the news. We knew in our hearts what was coming, but that didn't make it any easier to hear. I guess no matter how many years you've practiced medicine, or how many times you've had to give bad news, it just never gets any easier to tell a parent that their child has a disease that will probably cause his death in the first 2 years. He told us Jack's test showed he had the deletions - he had SMA, probably Type I.
Nothing in our lives would ever be the same. We felt so incredibly alone--but we weren't. After leaving us alone for a while, the doctors walked in with a walked a woman, her husband, and their baby. The doctors said "we thought you might like to meet the Meyers - their baby has SMA as well."
Kristen, Gary and Noah were also in Clinic that day to receive the same diagnosis. Noah was just one month younger than Jack. We both had older boys who were almost the same age. The doctors, in their wisdom, realized that our two families would be more helpful to each other than anything they could possibly say. We've been close ever since.
Jack and Noah battled SMA differently, but the support we were able to give each other was tremendous. Probably the hardest part for us all, was knowing that one of our boys would go before the other. Jack died in July, Noah in September. Now we support each other through a different part of the journey, and try, as best we can, to support other families facing the same struggles.
One day when the boys were still with us, we got together and took pictures. In one picture they were laying on the floor next to each other, but Matthew realized that if you turned the picture on it's side, it looked like Jack and Noah were dancing. Well, we believe they are dancing now.
Finally what happened
Jack's condition declined rather quickly. One day we found ourselves rushing him to the hospital because he was turning blue. He had experienced bad days before, but this time it was different. When we got to the hospital and they laid his little body on the table under all those bright lights, it became obvious just how bad it was. He was so lifeless. He was put on a respirator because he couldn’t breathe on his own, and moved up to pediatric ICU.
We made a decision that night to wait until Jack was out of ICU before we would let Matthew visit him. We didn’t want Matthew to see Jack with the tube down his throat. After several days we had to rethink that decision. We realized that perhaps if Matthew would see Jack again, it would be with that tube in his throat, because unfortunately it seemed to be the only thing keeping him alive. One of the nurses told us that with children, sometimes the fear of the unknown was worse than the truth. So we brought Matthew in. It was the right decision -- for everyone. The nurse was right. Matthew didn’t care about all the machines and tubes, and Jack was so happy to see him. Matthew told me after his visit with Jack "Mommy, I was beginning to think Jack wasn’t really there." It never occurred to me that he questioned whether Jack was still around. After that, Matthew visited Jack every day.
After almost a week in the hospital Jack was still on the ventilator, but everyone involved felt it was time to try to transition him to a negative pressure ventilator (iron lung). Our hope was that he could eventually just sleep in it at night. There had been some recent success with iron lungs for kids with SMA and it seemed to be our only chance of getting him off the ventilator. The iron lung can be frightening to look at, but to us, it was better than the tube sticking down his throat.
Unfortunately, the iron lung didn’t really do the job for Jack. He held his own in the iron lung for about 12 hours, but couldn't go anymore The tube had to go back in. After the first transition attempt failed, we knew we had to make a choice before we tried it again. If he couldn’t successfully breathe in the iron lung, would we choose to let him go, or would we have them put the tube back in? With each day that went by, any ability he had to breathe without the ventilator was fading. Chances were if he couldn’t breathe without it then, he never would.
I can’t describe the agony of that decision. It was the one decision I believe Mark and I prayed we somehow wouldn't have to make. Knowing Jack was going to die was hard enough, I really didn't want to have to decide when it would happen. But here we were, faced with that horrible choice -- if you can really call it that. If we left him on the ventilator, he could stay in the hospital and live for a while -- how long, we really couldn't know. If we chose to remove the ventilator, chances were he would die within hours. Without going into all the details of each choice, I can only say it was the most difficult decision of our lives.
We made our decision and got ready for the second attempt. It quickly became obvious that it wasn't going to work. He just couldn’t do it. He was tired and he was scared. I couldn't believe this was happening. We were going to have to make that choice after all. I kept thinking he would somehow start making a miraculous recovery and pull through it. But, he had really had enough and I could see it in his face. The pain of watching him that way was unbearable. I just wanted to hold him and make it all okay, unfortunately, there was only one way left for it to be okay. If he was going to die, I wanted him to be as comfortable and secure as he could be and I knew the only place for that was in my arms.
The iron lung was taken out of the room. The alarms were going off and people were crying. Everyone had this horrible look on their faces. They were pulling for him too, and they could see what was happening. I can’t describe the look on Jack's face as this was all taking place, but I’ll always remember it. I just felt like he wanted all of this to be over and he was looking to me to make that happen. We told them we wanted to hold him. Our doctor supported us. When they handed him to me I sobbed because I knew what it meant. My baby was going to die tonight. For two months since his diagnosis, we lived with the knowledge that he would die, probably before he was two years old, but it had come down to this one moment--and I wasn't ready for it.
For four hours I held him in my arms and rocked him. I tried to absorb everything about him – his smell, his taste, how his skin felt, the silky feeling of his beautiful blonde hair - because I knew the day would come when I would long to remember it all. I had done this same thing so many times since we learned his diagnosis, but this time was different - I knew it would be my last chance. At 12:15 a.m. Jack died.
I used to worry about how it would feel to hold my dead child in my arms. But once he was gone, I could see that Jack was no longer in this body. We could see that Jack was gone and that this body had simply been a vehicle to use while he was here. We knew he had moved on – and moved on to a better place.
Source: www.our-sma-angels.com |
