Hi, my name is Jisele Macleod. I am 31 years old and married
to a wonderful man and had a baby boy named Bretton on November 5th, 2002.
We are from a small village in Cape Breton, Nova Scotia. We
got married in Oct, 2001. As soon as we got married we knew right away that we
wanted to start a family. In Feb. 2002 we found out that we were pregnant!! We
were so excited, scared and extremely happy, so on November 5th, 2002 we gave
birth to a beautiful baby boy who we named Bretton. He was the joy of our lives!
Honestly I don't remember my life before he came along. He had hair like mine,
dark and very fine, it would stand straight up on end, and eyes as blue as the
ocean, like his fathers. We were what you would call "THE PROUDEST PARENTS"!
As for most first time Moms, I would watch his every move. I would make sure he
was eating right and drinking what he was suppose to. Most of my friends had
babies that were the same age as Bretton so of course when those babies would
reach a milestone like rolling over or playing with their feet, I automatically
assumed that Bretton would soon follow and when he didn't, we just thought that
he was lazier than the other babies. Bretton was the most pleasant baby I had
ever seen, I am not just saying that because he was mine or anything. You could
put him anywhere and he wouldn't make a peep!
So, as weeks went by and I
realized that Bretton wasn't improving in his motor skills, I took him to our
family doctor. I told him that Bretton wasn't rolling over from side to side and
that he wasn't lifting his legs up or moving his feet and that I was starting to
get worried! My doctor made a referral with a pediatrician. That is when the
appointments started! I took him to the pediatrician and he thought that he had
"Lazy Baby Syndrome". He would go at his own pace and time. Just be patient!
Bretton was around 7 months old at that time. I had to bring him back every 4
weeks for an evaluation.
When the pediatrician realized that he wasn't
improving, he told us that he thought Bretton had what was called "Hypotonia".
He also told us that the majority of babies that have this out grow it by the
time they are 3 years of age. So that is when Bretton had his first blood work
done and the pediatrician made a referral for a CAT Scan to be done down here.
The blood work results came back and they were fine. They didn't show anything.
I figured that if they didn't show anything it means Bretton will eventually get
better. We got the appointment for the CAT Scan for October 8th, 2003. That was
in July of 2003.
Then in September of 2003, our nightmare just begun!!! On
Wednesday, September 24th, I called our pediatrician and told him that I thought Bretton was getting worse cause it didn't matter what I did, the poor little guy
could not hold his head up at all, even if I propped it up, his chin would just
fall to his chest and he couldn't lift it back up! They told me to take him in
right away. That is what I did, and when the doctor seen him, he told me to take
him to the hospital for blood work and an urinalysis. After that, I took him
home, bathed him, fed him and put him to bed for the night.
The next day was
like any other day, he got up at around 7:30 or 8, gave him breakfast and did
the norm. Then that night we put Bretton to bed at around that same time. He
woke up at 11:00 pm and fell asleep at 11:30pm. Condon put him back in his crib
and we said good night and I love yous and went to bed. I slept in the
livingroom because he was starting to wake up during the night for a bottle so
it was easier for me to hear him because his bedroom was next to the livingroom
and so we wouldn't wake his father.
The next morning was the morning from hell!
Every morning before Condon went to work he always checked on him to see if he
was still sleeping or not cause most of the time he would be awake in his crib
but not saying anything. If he was sleeping you could hear him cause he was a
big snorer! Condon couldn't hear anything and went in his room to check on him.
And on the morning of September 26th, 2003 that was when my beautiful baby boy
was taken from me!
Believe me there are days when I don't want to get out of bed, but there is
something that pushes me to go on day to day. For the months ahead everything
was crazy. During all that we were in the middle of building a new home, which
we finally got in! It was definitely not the same because it was for the three
of us not two. So everyone in our community were beyond generous, people showed
up to finish our house, brought food, you name it, they did it!!
passed away, I really thought that he died of crib death because we didn't get
back any of his results. But we also knew that there was something wrong with
him. So in order to find out what exactly happened, we would of had to wait for
the autopsy results. It took like it seemed forever for the results to come in.
When they did finally arrived, 5 months later, we found out that it wasn't crib
death. Bretton had SMA type 1 or also known as Werdnig Hoffman disease. We were
shocked! We never heard of this before, neither did any of the doctors. We
didn't know where to turn or anything.
Now I have information overload!! I found
the website SMA Angels. It is wonderful and I also have a terrific new friend
named Angela who has been a god send to me. Unfortunately, I know what it is
like on the other side of the fence which no one should ever have to experience.
On a positive note, Condon and I are going through invitro fertilization and PGD
technology. It is really complicated but if it can give us a healthy baby, we
will take it.
If I can help just one person out there, I can then be happy that
I have made a difference. Anyway, all my thoughts and prayers are with all the
Moms/Dads with their own angels, here and above!