Sagittal Craniosynostosis
Gabriel's Story
Gabriel's Mum Keila tells their story...
Gabriel was born via elective c-section on the 3rd of April 2024, at 39 weeks and 3 days. From 20 weeks gestation we were told he was measuring in the 98th percentile for all measurements (which wasn’t a surprise as his brother was the same), he was head down from around the same time and was very hard to get a clear picture of his head on ultrasounds.
Gabriel was born with a full head of hair and when he arrived there was no mention of his head shape being abnormal with no concerns about the size, we aren’t new to the circumference of heads being off the curve as dads side has quite large heads.
Our Maternal and Child Health Nurse (MCHN) mentioned the shape at the 4 week appointment and suggested getting an ultrasound, which we did and we were told it was nothing to be concerned about. However, at 6 weeks Gabriel had RSV which we attended the hospital for and the Paediatricians there explained to us what they suspected, referring us to for further investigation.
After the initial consultation and a CT scan we were told that Gabriel had Sagittal Craniosynostosis. Unfortunately, by the time it had been picked up it was past the timeframe for a less invasive surgery and he would need a full cranial vault reconstruction. This surgery scared us as we were obviously informed of the risks. However we were reassured that our surgeon had done many of the exact same surgery and had a very high success rate. Although this didn’t make our worry go away, it eased it a little and we put our faith in the teams hands who would be helping our little boy.
Then it was a waiting game of when we’d get the call that he had a surgery date. We had seen the eye specialist and he was lucky to not have pressure behind his eyes which meant he wasn’t an urgent case. We were expecting his surgery date to be at the later end of the timeframe we were given (between 10-14 months old) as there were other cases more severe than his.
Gabriel being 10 months came closer and we weren’t even thinking about the surgery, we didn’t want to be stressing every day when the surgery could be in 3 months time. So we kept going with our day to day, attending swimming, daycare and spending as much time out and about.
We received his date early February 2025 and the nerves kicked in. We took him out of daycare, swimming and Gymbaroo to minimise possibility of him getting sick. We explained to his big brother that we needed to be really mindful of giving him kisses as we could pass on germs and then he may not have his surgery. (Very hard to tell a loving and affectionate 2.5year old that he can’t kiss his baby brother)
As the date creeped closer and closer it became more real and more scary.
Surgery day, we said "see you soon" to Gabriel’s big brother. We took Gabriel to the hospital for his big surgery. Gabriel was his happy and bubbly little self all morning, standing up in the cot in the pre-op waiting area. He was laughing and blowing raspberries until the second he was put under. Then for myself and my partner it was a long and anxious wait for the call to see him in recovery. We were lost on what to do because we didn’t want to leave the hospital knowing our little boy was in there. We also knew it was going to be a few hours before they would give us the call.
The surgeon rang and said he was out and that they were happy with how the surgery went. There was minimal blood loss and hardly any blood needed for transfusion. The first time I saw my little baby after his surgery I cried, I was in shock about how different he already looked. We had been looking at a skinny little face for 10months and now he had a cute chubby little face.
As soon as we arrived in the ward, our tough little man just did not want to sit still! He was trying to stand up and wanted to move. The nurses were all surprised at how quickly he was trying to get back up and just knew they had their hands full for the next few days.
The first night was rough. Gabriel’s pulse kept dropping due to a mix of the pain relief he was on and just the fact he is a very deep sleeper at home. The monitors were beeping every 3-5 minutes so the nurses and I spent most the night trying to arouse him and make sure it didn’t drop too low.
The second night was even longer as he was very uncomfortable coming off the strong pain relief, only being able to lay one way and not being able to sleep on his stomach. My little boy just wanted to be held the whole night.
The third night was the easiest with being in a routine with eating, breastfeeds, sleep and medication. This was the last night in hospital. The surgeons and nurses were very impressed with Gabriel as he was up and ready to go home. He still had swelling around his eyes but they were open enough for them to be happy with him coming home to continue his recovery.
From the minute we arrived home Gabriel did not stop! He is very cheeky and on the go constantly no matter how many times we redirected him and sat him down. He has a cheeky little smile that just makes you forget about anything bad or stressful going on. His little raspberries and noises just brighten up the day!
Day after day he impresses us with his recovery and resilience. We can’t wait to watch him grow and see how much he changes throughout his life.
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Thank you to Gabriel's Mum Keila for sharing
their story.
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