before I needed to go to the hospital and so I went back to
bed and had my first official panic attack. Around noon, we
arrived at Botsford Hospital and after almost 12 hours of
labor I gave birth to a baby boy at 4:44 p.m. Steven Michael
had blue eyes and dark hair. He was 8 lbs, 1 oz and was 20
inches long. He was perfect. I was completely in love.
Fast forward to April of 1997. I had a six month old little boy. I was living with my dad and attending Adrian High
School. My “elective” class was a parenting class that I almost thought was the counselor being rude. It was right before spring break that we were told we could bring babies
to class (cousins, siblings, neighbors, or our own) to study
them for an hour and see the different stages of development. I was the only student who had their own baby and
I was happy to have a chance to show off my perfect son
and show everyone that I could have a 4.0, work, and be
a mom at the age of 16. As we went around the room from
the youngest baby to mine I began to get nervous. I started
thinking about all the things I had read and the developmental timeline and I knew that my son was falling short
on some of these deadlines. When the teacher got to me
and asked me how old he was and I
said 6 months other students began
asking if he was sitting up on his own
yet. I responded no but he could roll
from his back to his belly and hold
his head up. The teacher came over
and gently asked if he could roll from
his belly to his back and I said he
could not. She held him and cooed
and said all the right things but after
class she asked to speak with me.
She told me she thought I may want
to get him into his pediatrician and
see what they said about his growth
and development. I took it in stride,
said I would and went on about my
day.
the amount of activity taking place in the brain. Tons of electrodes are placed on the head of the person, or in this case
infant, and they are left there for approximately an hour or
so until the test has completed itself. In Steven’s case some
of these tests were left on for longer periods of time so they
could see what happened when he had the jerking movements I had described. They also video recorded his EEGs
and other behaviors so they could see exactly what I was
describing in my intake questions.
After several EEGs and a MRI (Magnetic resonance imaging) we were given a diagnosis. Steven had infantile
spasms. Infantile spasms is a rare form of epilepsy that is
brought on by an epilepsy syndrome known as West Syndrome and is characterized by the child having infantile
spasms, developmental regression, and chaotic brain waves
or activity. We knew something was off because he was not
reaching the milestones described to me in the baby books
or my parenting textbooks, but we were not clear on the
cause. Now we had an answer. The treatment for this was
corticosteroids. In Steven’s case they gave him AZHT, the
same steroid they give to AIDS patients to help them build
up their strength.
“In 1996, doctors
were less than kind
about the miracle of
a baby when in relation to a 15 year old
patient.”
Spring break came and I went to visit my mom, step-dad,
and siblings. After Steven had a bottle he began jerking
his little body in a violent motion. His whole body would
jerk up, knees pulled in, fists closed tight, but his eyes were
wide open staring into space. I called my mom over and told
her to watch him. I (incorrectly) assumed these were moro
reflexes (also known as startle reflexes) that all newborns
have. She informed me that those stop around one to two
months and this was something completely different. She
immediately got on the phone with University of Michigan
hospital and told the people at pediatric neurology about his
symptoms. They got us an appointment for that week.
This is where it becomes problematic to be a teen mom. You
can be physically ready and you
can psych yourself into believing that you are mentally ready
but when you are not legally old
enough to get your ears pierced
without your parents’ permission,
but you have to make life-altering decisions for another human
being. They told me that with the
seizures, Steven could be developmentally delayed, that he may
never crawl or walk, or that he
could have problems that would
make learning in regular school difficult. The steroids themselves could present their own problems including infection
at the injection site, gout, sensitivity to sunlight, and possible
blindness from the AZHT. After consulting with my parents
and the team of doctors at U of M hospital, we decided to
go ahead with the treatment. I had to learn how to take his
blood pressure because I would have to do that twice a day.
I had to learn how to give him the injections of steroids. I
drew a grid of nine dots on each of his chubby upper thighs
and alternate which leg got the shot each day. Despite my
4.0 GPA, I was not a doctor and they always sent a trendy
med student down to my room to dumb things