By Melissa Meehan
Susie Cullen has always been a happy and easy going baby.
She is always smiling, laughing and making those around her laugh.
And her favourite thing to do is dance around the house and play with her brother Wes.
Looking at her now, you wouldn’t know Susie was born with a birth defect called Craniosynostosis.
A condition when the sections of a baby’s skull fuse too early.
The ‘cracks’ in a baby’s skull are called Sutures, and in Susie’s case the Metopic Suture that runs down the forehead was fused at birth.
This gave her a pointier, more triangle shaped forehead.
There is no evidence as to why this happens and only occurs about 1 in 3000 births.
Her mum Donna McGowan hadn’t heard of the condition when a midwife first raised concerns about Susie’s “unusual” forehead at birth.
A paediatrician assessed her when she was one day old and referred them to the Royal Children’s Hospital Melbourne plastics department.
“We had a consultation when Susie was three months old. The surgeon took one look at Susie an confirmed she had Craniosynostosis and would require Bi-frontal orbital advancement surgery between 11 and 14 months of age,” Donna told Kids Today.
“Neither of us had heard of it before, but chatting to friends and family we soon realised it was fairly common and many people we spoke to knew of someone that had it.”
Susie’s prognosis was good and her surgeon was confident that surgery would be successful and generally improve her quality of life.
It was clear that he was very experienced, saying that he did this kind of surgery twice a month, and the success rate was very high
“Our hearts sank when he said surgery,” Donna said.
“The thought of our tiny baby having a General Anaesthetic and such an invasive surgical procedure that would require her brain to be exposed for a period of time and a blood transfusion had us terrified.
“But Susie’s surgeons comforted us and they had our full trust.”
Without surgery Susie’s brain wouldn’t have had the ideal space to grow into.
Her forehead would have continued to grow in a pointy shape and she would have looked noticeably different and would have had to live with everything that comes with that.
They waited eight long months to be given a surgery date.
And while they tried not to think of it too much, Donna would get upset when she did.
“I couldn’t help having mum guilt and wondering if it was something I did during pregnancy to cause this,” she said.
“Once we had the date the nervous butterflies really kicked in as now it was time to have imaging and blood tests done.”
But when it was time for surgery Donna pulled herself together to be strong for her little girl.
It was during peak Covid-19 times. So only one parent could attend and because Donna had more knowledge of general anaesthetics through work, seeing hundreds of kids go under anaesthetic she was the chosen one.
“I knew I had to be strong for her, to show her there’s no reason to be afraid and everything would be fine,” Donna said.
“I was fine until just after she went to sleep, then I broke down and all the emotions I had kept down for her came out and didn’t stop for the next 6 hours.”
The surgery consisted of removing the forehead section of skull, breaking it into pieces and putting it all back together using dissolvable pins and screws.
“I remember going into recovery to be with her for when she wakes, seeing her incision line, puffy and different looking face and cords coming out of every arm and leg – it broke my heart,” Donna said.
“=It was nothing I could have prepared for. But within hours she was sitting having bottles and smiling and my heart was no longer broken but was filled with pride, that such a tiny human went through such a massive ordeal.”
Within 24 hours after the surgery Susie’s swelling kicked in – both eyes swollen shut and it was obvious she was uncomfortable.
But within three days she was well enough to go home to her brother Wes and dad Brendan.
While in hospital, Brendan did his best to keep Wes’ days as normal as possible with kinder and a sleep over at his grandparents.
They would also video call Donna from home, but didn’t show Susie as they didn’t want him to worry.
Brendan says he found it difficult not being with her as much as Donna was.
He found himself stressing at nights but he busied himself with caring for Wes. He even treated him to tram rides and McDonalds dinner.
Susie’s surgeons were very pleased with how the surgery went.
And her 3 months post op check her surgeon was very pleased with the new shape of her head and how she was healing.
He doesn’t expect any future issues or need for more surgeries.
She is now on annual checks and will be until 16 years of age.
Donna and Brendan’s words of advice for parents about to go through the same thing:
“As hard as it is, don’t blame yourselves. Push that parent guilt aside! Kids are tough, its incredible how much they can cope with,” Donna said.
“I would recommend joining a Facebook group and chatting to families going through similar things or who have been through it already.”
