Our Baby

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(April 1998)

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. 

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