Cranio-Warrior Attila has been through a lot in the first 6 months of his life.

Mum Katharina reached out to Craniofacial Australia in a bid to raise awareness. In doing so, she leaves an invaluable footprint for other families.

This is Attila’s story:
 
“Attila was born with an egg-looking head shape, which clinicians thought was due to the vacuum and forceps used during birth. Shortly after, they struggled to find his fontanelle so they sent us for an ultrasound. About two weeks later, they advised that he might have Craniosynostosis.

We had been googling since day one and felt terribly uneasy as we didn’t know what to expect. We didn’t want this to happen to our little boy who was so wanted after a pregnancy loss 2 years prior.

We had our first appointment booked in December with the team at Perth Children’s Hospital.

The unknown and the waiting was bad enough. To add to our stress levels, he had to undergo an emergency inguinal hernia surgery at 6 weeks old, where they removed 20 cm from his bowels. He recovered well from that and gave me a little hope that at his next surgery will be fine and that he was in good hands.
 
►   The first appointment came and the team confirmed that he had both Metopic and Sagittal fusions.

They had never come across a child with both of those fusions, so they encouraged us to get some genetic testing which thankfully came back negative.
 
The surgery happened 13th of March and I was a mess leading up to it. I had faith in the team. I knew it needed to happen but I also felt terrible that he had to go through something so big at only 5 months old.
 
Surgery took 6.5 hours. They ended up creating a fist sized fontanelle on top of his head to give enough room for the skull to fuse slowly. It was bizarre knowing that it was my son laying there, but he looked like a different child!
 
The first night at ICU was OK. The drugs kept him asleep, only waking a couple times. In the ward, things got worse. He was in lot of pain and when the heavy IV drugs wore off, they unsuccessfully tried to give pain medication orally. It was so awful seeing him in pain, his face was all swollen couldn’t even open his eyes. I knew he’s been taking care of but I still felt helpless.

► The turning point was at day 3, when he managed to open his eyes lightly and the smiles returned. Bit by bit, he would feed and play more, turning back to his old self.

He was discharged on day 6.

We are 6 months post op, the Big 1 is just around the corner and our boy is thriving! 

He still has a small gap which worries me sometimes but otherwise he’s meeting all the milestones so far. He stopped vomiting after the surgery, the seizure like episodes also stopped and his hand movements improved.
 
I hope he won’t have to go through another surgery again. I hope he continues to thrive and make everyone happy around him. His spirit and smiles are infectious and I hope nothing comes in the way of that again! 

Thank you to Katharina for sharing

Attila's story.

Please donate today to help others, just like beautiful Attila. Thank you.