coen
“He loves to play with his brothers, loves
music and loves being outside looking at
birds. He is a huge basketball fan. He is so
full of life and has an amazing personality. ”
Stories of Hope
Coen was born July 26th 2008, a normal birth, a healthy 4.6kg. The port wine
birthmark over the right side of his face was the first thing we noticed. We were told
within hours of Coen’s birth that he may have Sturge-Weber syndrome and we will need
to have tests done. I was so hurt and very sad for my little boy, I spent the next few days
thinking of what I did wrong to have done this to my son. Coen had a CT scan the next
day and then we were referred to our neurologist a few weeks after.
For the first 3 months of his life he was developing very well. He then had his MRI
and that’s when he was officially diagnosed with Sturge-Weber syndrome.
Coen went on for 2 more months seizure free. At 5 months Coen was playing
happily in the living room when I noticed his left side of the face was twitching. I took
him to the hospital as it lasted about 10 minutes, and that was the first and only for the
day, so we were sent home. The next day was Christmas and he went seizure free. It
was a wonderful Christmas, his first. The following day the seizures started up again, but
this time they were more frequent and lasted a lot longer. We stayed in the hospital for 2
months trying to get his medication right.
Because of the constant seizures and paralysing affect they had it caused aspiration
problems which led to pneumonia. Coen had to have a NG tube put in which then led to
a gastrostomy.
Coen’s seizures progressively got worse and lasted for as long as 2 hrs. His meds
stopped working. We then were told that Coen would need a hemispherectomy. We
had no other choice, we were watching our baby boy waste away in front of us, and we
just knew we had to do this.
The surgery took place in September 2010. It was a day filled with a lot of
emotion. I saw Coen 10 hrs after I left him with the anaesthetist. The surgery was a
complete success and he looked amazing. My fears were quickly diminished and he
quickly showed me that he was going to be just fine. I would absolutely encourage
anyone thinking of having this surgery done to just do it. It was the best decision we
as parents have ever made, and now we have a happy healthy seizure free son who is
developing slowly but surely.
Coen today is 3 yrs old, and starting to say words. He can understand everything we
say, is walking with assistance, loves to laugh and have fun. He loves to play with his
brothers, loves music and loves being outside looking at birds. He is a huge basketball
fan. He is so full of life and has an amazing personality. This Coen didn’t exist only a few
months ago due to the high dose of anti epileptic medications, and crippling seizures.
He was always sedated and spent most days sleeping.
I am truly a lucky Mum to have had the opportunity to help my son. I will be forever
grateful and will never ever forget the families that don’t have that as an option. I have
friends that have to deal with these horrible seizures for life. I am so thankful every day
to have a happy healthy baby boy.
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