I still remember the nurse reaching for the emergency button. He had to be resuscitated, and it was the first of many times in those first 11 weeks. The longest time for him without breathing was three minutes and 46 seconds, I was convinced we’d lost him, but doctors kept working on Hazzi and he started breathing again.
Every day my partner Paul and I lived in constant fear that we’d lose our son.
“We lived in constant fear.” | Image: supplied.
Harrison has Moebius syndrome
Moebius syndrome is a rare neurological syndrome that affects muscles that control facial movement. It’s a syndrome, so the symptoms and amount of paralysis can be different for each person. When Hazzi smiles, he can only smile on one side of his face, three quarters of his face is paralysed, which also affects his airways.
During my scans nothing showed up, only that Hazzi had a club foot, which can be linked to some syndromes – so we had no idea what lay ahead.
Within the first 24 hours of his life, Hazzi was fitted with a nasopharyngeal tube to breathe and a nasogastric tube to feed, there were tubes everywhere. He loved pulling them out too, we used to call him Hazzi Houdini!
At 11 weeks, he had a tracheostomy, doctors cut into his neck to give him an open airway to breathe through, and once we’d had trache training, we could finally take him home, he was 15 and-a-half weeks old. We loved having him home with us, it was amazing, but also exhausting and stressful. When you have a trache kid, you have to clear their airways many times during the night. I remember once lying next to him, it was 2.06am. I nodded off and woke up because he needed his airways cleared. I’d just had a 30-second nap that felt like I’d slept for hours. It was still 2.06am.
We started teaching him sign language very early on, doctors told us he might never eat, talk or walk. When Hazzi was almost three, he had a submucous cleft palate repair, if the operation was successful it would give him the ability to eat and talk, and it was.
Hazzi (pictured with brother Ted) loves to run. | Image: supplied.
“These days Hazzi likes to run”
And as for walking…… well these days Hazzi likes to run. He has low muscle tone so can’t run fast. At a school cross country, teachers said he didn’t have to take part, but he wanted to. He might be the slowest, but he wouldn’t be the last, because he’d never be one of the kids who walked it in the end.
The Moebius syndrome means he can’t get lip closure, Hazzi uses his bottom lip and teeth to make certain sounds, and his tongue doesn’t have much movement. Most people can understand him, but if someone can’t, he just changes the sentence and explains it in a different way so they can.
Hazzi can move his eyes up and down, but only 1-2ml from side to side, one eye is also turned in. When we move our eyes, this means our brain gets feedback, Hazzi likes to spin and spin like Turkish dancers do, to give him the sensory feedback he requires.
Hazzi has a younger brother, Edwin (Ted) who is now seven and-a-half. When he got decannulated (his trache came out) Paul and I thought OK, we’ll try for another baby. Ted is incredibly caring and patient with him; they’re the best of friends.
Hazzi with big brother, Ted. | Image: supplied.
“I suffer PTSD”
People often ask me, how did you cope in those early days? I wouldn’t have, if not for the medical support and the help of family and friends. He’s had so many operations – last count we were up to 17. Even if it’s only a little operation, I suffer PTSD from that, it’s still very traumatic and the memories of what he’s been through are still very raw.
His airway issues are getting better, because as he grows, his airways get bigger. But he’ll always have the facial paralysis. There’s an option to have a smile put on the other side of his face, but it doesn’t work like a natural smile. It’s a muscle transplant, and he’d have to bite the back of his teeth to make the smile happen. We went to see a plastic surgeon and I asked him if he wanted the operation. He said, “Noooo,” I said, “why not?” He replied, “well, I won’t have Moebius anymore mum, I won’t be me.”
Hazzi is incredibly resilient. | Image: supplied.
“He has his quirks”
Hazzi does well academically at school. He has his quirks… and yes, it’s true, if he didn’t have Moebius syndrome he’d run faster, and if he didn’t have Moebius, he wouldn’t have facial palsy, but if he didn’t have Moebius, I doubt he’d be as confident or as resilient as he is.
Hazzi has come such a long way. He couldn’t blow out the candles on his cake when he was little, he didn’t have enough air to do that – his last birthday a few days ago, he blew out all 10. He’s in Year 5 now and recently changed schools, he’s gone from a very small school to one with 10 times more students. After a very short time, I realised lots of teachers and kids knew who he was. I asked him why? He said, “It’s ’cause I’m cool, Mum!”
This article was first published on Kidspot and republished on theAsianparent with permission.
Permission granted for use of images from Kidspot.
ALSO READ: Kawasaki Disease: What Every Parent Needs To Know
