Michael Andrew Russell Steckler
the first thought that crossed my mind when I found out I was pregnant at the
age of 31. I had been told years
before that I probably never be able to get pregnant, but here I had the doctor
telling me I was not only pregnant, but that I was 4 ˝ months along.
Well, I left the doctors office about 6 feet off the ground!
I LOVED being pregnant. I
gained 20 pounds in the first month alone (not healthy – and certainly frowned
upon by my OB/GYN). I waddled, I
glowed and I was gloriously happy. I
wasn’t worried about the reduced fetal movement.
As a Child Development Specialist and preschool teacher for 16 years, I
knew that some babies are just very low key and besides I was so active and
started out my pregnancy at over 200 pounds that I just thought everything was
ok. As they say hindsight is 20/20.
The techs at the Fetal Assessment Center always
smiled after each ultrasound and said I was having a beautiful, HAPPY baby.
I didn’t catch on to this until much later.
But I went blissfully along until the doc said it was time to induce (1
week past due date). The IV
didn’t do the trick, but after the water sac was broken everything went pretty
smoothly (except when in the middle of a contraction and getting the epidural
– I cussed out the anesthesiologist!) Gary
was by my side the whole time, and I can truly say that made me very happy.
Michael came into this world on a beautiful sunny day
in the middle of December. My labor
was about 12 hours. I thought,
“Man this isn’t so bad after all!” Gary’s
attention was focused on the baby as I babbled on about how easy that was.
The nurse brought our son up to show him to us, as the doctor quickly
said something about him not being well and going into the neonatal unit.
That caught my attention.
He was so beautiful! Thick auburn curls covered his head, he was 23 ˝
inches long and weighed 7lb. 12oz.
How could anyone believe something was wrong with him?
After 3 weeks of talk, speculation and theory,
I had had it. The social
worker came along one day after I arrived for my visit and asked how I was. After telling her none too politely exactly how tired I was
of all the word games and guess’. I
rather rudely told her exactly how I thought they were playing with my son’s
life. Well, surgery was scheduled
for the next week. A tracheostomy
was planned to help him breath. He
had been intubated at birth and failed several attempts to wean him off the
vent. A g-tube was planned for
nutritional purposes. He had no
suck reflex and would need a source for feeding.
Finally, a muscle biopsy was also planned for diagnostic purposes.
An answer would be ours soon we hoped!
Exactly one week later, as we sat down with the Neonatologists, we knew
the news was not good. The doctors had thrown Wernig-Hoffman Disorder at me not days
before saying, “This is what WE think might be the diagnosis.
Prepare for the worst.”
But leave it to Michael! He was diagnosed with Myotubular Myopathy AND Dandy-Walker
Syndrome. One genetic disorder was
not good, but to find he had two rare genetic disorders was mind boggling!
Both disorders wrote an early life for our son, and we started living day
Two and a half months later, after having a shunt
placed to reduce Hydrocephalus, Michael came home with Mommy and Daddy.
Grandma and Grandpa were along for the ride too!
Our son had a bright colorful nursery filled
with books, toys, and several medical machines.
It was not the nursery of my dreams, but I was determined to make it the
best for Michael! He was alive and
I was going to celebrate each day with him!
I had been taught how to suction, change a trach
tube, dress the g-tube site, attach an apnea monitor and feed my son through his
g-tube. The friends I grew up with
and knew for most of my life all drifted away.
It was hard to say if they left me or I left them.
Our life was consumed with doctor appointments, therapy and dealing with
the Nevada Medicaid system.
After the trach was placed, Michel was able to
breath on his own, but at 6 months we returned to the hospital with double
pneumonia. Michael then became
ventilator dependant. I then
learned to operate a PLV-100 and change the tubing as quickly and efficiently as
possible. My husband was a great
support and my parents went over and beyond what is called for of the typical
Another 6 weeks later Michael came home.
We lived each day to the fullest, as the doctors were always clear on how
unsure they were of just how long Michael had.
Just imagine how surprised we all were when we found out Michael was the
only one in the WORLD with both of these rare x-linked disorders!
Life consisted of doctors visits, therapy, early
intervention visits, phone calls to the state operator for the Medicaid system,
researching resources, and always return visits to the emergency room.
Triage room 10 – bed 1 at Sunrise Hospital became the Michael Steckler
suite I joked. The nurses and
doctors all knew Michael well. How could anyone resist him!
He had soulful dark brown eyes, thick curly auburn hair, and a killer
smile. He spoke volumes with body
Then we experienced yet another miracle!
I know everyone says they have heard of someone or read about someone
having a baby and not knowing they were pregnant, well count me as one of them.
Jessica was born when Michael was 2 ˝ years old.
She was perfectly healthy. We
stressed over how Michael would react to a new person sharing his domain, but
worry was for not. Michael loved
Jessica from day one. He loved to
sit with her. He would smile when
she crawled through his tubing. He
truly adored his little sister. Jessica
was just as smitten with Michael.
The first 3 years of his life was more in the Peds
ICU, than at home, but the doctors and nurses made sure we were always appraised
of what was going on – Gary and I were definitely part of the team.
Michael had episodes throughout his life, which
everyone mistook for respiratory distress.
He would become pale and sweaty. He
seemed to have trouble breathing, even with the ventilator.
His beautiful face would contort into a grimace and he would start to
cry. Aggressive CPT and suctioning
was immediately administered, but sometimes the episodes were so severe we
called 911 for that inevitable ride to the hospital.
No one seemed to think of these episodes as anything other than
respiratory and of course Michael would have some sort of bacteria or pneumonia
which needed to be treated. As I
said no one was too worried about these episodes!
Life went on as usual in the Steckler household.
We would have a morning round of doctors appointments, have down-time at
Grandma & Grandpa’s midday, and then do an afternoon with the therapists! Jessica always tagged along in her backpack attached to the
back of Michael’s chair! We were
a sight rolling through the halls of the hospitals or medical buildings in town.
Every once in a while we got to do something typical and fun.
Like the day we went to the mall (the one with the merry-go-round inside)
and asked the operator to stop long enough for us to load the chair and machine
next to the bench so Michael could have a ride.
“Well,” she said “We do have a ramp and tie downs but no one knows
how to use them!” We did a quick
run through for them to get the hang of the equipment and we got 2 free rides
for the trouble! Mom had the camera
handy and we got a picture of me and Michael, doing the victory wave, as we went
I became very proactive in the Early Childhood
Special Education Program in town – learning all I could prior to Michael’s
start in school at age 3. I look
back now and laugh at the fact I had the school district scared enough to call
the special ed department at UNLV to ask them how to handle “A CHILD LIKE
THAT”. Needless to say the school
experience was a disaster! Michael
was the FIRST child to enter the Clark County School District in the Early
Childhood Program on life support and the school district didn’t have a clue
on what to do or how to do it! They
put him in the classroom with a first year teacher, who was so scared of him,
she had his aide doing all the work. She
wouldn’t look at him for a million bucks!
I became so upset, we moved into another school zone.
The move of 5 miles put us in the zone of one of the best schools and
principals in our huge district! The
first time Michael and I met Scott Ober, he actually knelt down to talk to
Michael and even reached out to touch his cheek!
I think I cried and swore that Michael would be enrolled in his school
the next week! Those next few
months were a dream. Michael
thrived in the new school. A circle
of friends was developed and we soon has kids coming over to play, watch
cartoons (favorite movie was Ferngulley – the Last Rain Forest) or just hang
out with Michael.
Michael was part of a training program at the
university the next school year. Several
Masters level students were developing the MAPS (McGill Action PlanS) program in
our district and looked for the toughest case available.
Guess who they looked to? Well
part of the training involved my going to Vermont to learn more about MAPS with
Michael’s team from school. We
flew out with the blessing of all Michael’s doctors and my family.
Michael smiled at me so sweetly when I kissed him good bye that morning.
The next 3 days were full of meetings and exercizes.
During a short break back in the room, I got the call all parents dread.
Gary called with the news. “Come
home now!” was all he could tell me. In
a daze I flew home thinking “Not now! Michael
has still so much to do and we aren’t ready!”
But the moment I walked through the hospital doors I knew Michael was
already gone. The beautiful soul I
had carried, loved and cared for had gone home.
Those ‘RESPIRATORY EPISODES’ we had been experiencing for so long,
turned out to be hypoxic seizures.
We turned off the life support a few days later and I
held my baby’s body as he took his last breath. I write these words 5 ˝ years later and am amazed what
Michael accomplished in his short 3 years and 10 months. He continues to be mentioned in school district trainings, a
video of his MAP session is played in University classes, the school district
modified its school nursing program, and every so often someone approaches me
and says “I know who you are – YOU are Michael Steckler’s mother!”
That is one of the nicest things anybody could ever say to me.
God’s plan sure wasn’t crystal clear to me when Michael was born, but
each day that goes by I thank him for giving me an opportunity to play a part in
updated 05 August 2001