Misdiagnosis

When Max was born he didn’t have the normal eating reflex that most babies have, in fact, the NICU almost put him on a feeding tube.  He was 9 lbs 7 oz, so a normal size baby, but he was 4 ½ weeks early.  It took the nurses one day and one cc at a time in a tiny, tiny bottle to get him used to sucking.  I knew then that something was wrong.

My family works in the medical field, so of course they had their two-cents, but as a mother I was in denial.  You don’t want to think that anything is wrong with your baby, so, I denied everything.  Don’t get me wrong, he was fine and he wasn’t suffering, by any means, or I would have gotten help from the beginning, but I believed in him.  I hoped that he would pull through and it was just a fluke.  I hoped that everyone was just overreacting…  this wasn’t the case.

He was delayed in crawling.  He was delayed in walking.  And the poor baby didn’t eat baby food until he was around 3.  I took him to the doctors at Children’s Hospital long before this, but I’ll admit that I was in denial.

At 18 months old, I finally gave in to my parents pressure and scheduled an appointment to have Max looked at.  I remember the day clearly; that is, up to the point they gave us a diagnosis, and then it was just a blur.  We had doctor after doctor come in and play with him, try to make him eat, try to make him walk and all sorts of other tries.  I knew every step of the way he was failing.  I wanted to pull him away and say “that’s enough!”  But I knew I couldn’t, it was the best for my baby.  I wanted so badly for him to pass all of these tests, but it just wasn’t happening.  I fought back the tears, and with my mother by my side, she stayed strong.

I was young when I had Max – 18 years old.  I was raising a baby by myself, and I was making it work.  I was able to support myself, and I worked hard at providing only the best for my little boy, but I don’t think being young had anything to do with being scared, I think that any mother would have felt the same thing in my situation… I was terrified.

What Happens Now?

The doctors diagnosed him with Cerebral Palsy (we didn’t find out he was misdiagnosed until 10 years later).  I asked question after question as to what this meant and what our next steps were.  The kind doctors at Children’s Hospital offered a slew of information for us, but it was overwhelming.

I called Max’s biological father to tell him the news, but it only seemed to cause a further distance that had already occurred.  At this point, besides my mother, I was alone in helping Max.  There was no thought of me being too young or incapable, because I had devoted my life to him when he was born.  This wasn’t the time to back-down… it was the time to prove that even at 18, I could do this.

I took him to therapy after therapy, and study after study, all of which were at Children’s Hospital, and they did an amazing job.

It was overwhelming to say the least, but we got through it… together.