Changing Faces, Changing Lives
Harper’s Story
“Sometimes, things really do just go to plan. Even after a rough start.”
– Jessica, Mum
After an emergency c-section, Mum Jessica gave birth to baby Harper, who had jaundice, causing her stay in hospital to be prolonged. At Harper’s hospital discharge, the doctors did a thorough examination and noticed her fontanelle was very small and hard to find. Harper was immediately referred for an MRI.
The call for an MRI did not come and at Harper’s 6 week check up, their Paediatrician changed the referral to a CT scan and sent it through. Within a few days the family took a call with the booking time and date.
The CT scan went smoothly. Mum Jessica fed Harper a bottle, wrapped her up tight just as she would for bedtime and she slept soundly for the entire scan. It didn’t take long for Paediatrician to meet with the family to discuss results.
Jess recalled, “I remember the feeling… I knew the answer but I had hope that it wasn’t the case.”
In August 2022, Harper was diagnosed with Sagittal Craniosynostosis at 10 weeks old. Dad Matt couldn’t come to that appointment, and Jess had all 3 sons with her.
“I’m usually not a person that shows a lot of emotion, but it felt like a tonne of bricks had hit me and I couldn’t hold back the tears between asking, ‘What next?'”
The Paediatrician sent off the referrals for surgery and told Jessica to wait for the call.
By this point, Jess was experiencing post-natal depression.
“I could barely look at the doctors as they spoke to us. Thankfully, they allowed Matt and I to stay in the same room despite restrictions. He was my rock throughout it all. I could barely focus or take in anything they were saying. It was and still is quite a blur to me. It all happened so fast”.
A number of treatment options were presented and Harper had her surgery. The surgeons and doctors made us feel comfortable and confident” Jessica says.
Shortly after, a date was provided and later postponed.
Harper’s surgery was first in line and Jessica took her in to the waiting room to waited for the Anaesthetist to arrive.
“It felt like forever sitting there, waiting, just cuddling her. She was as happy as always. The Anaesthetist came out and I gave her the biggest cuddle and kisses. As he walked away, tears were running down my face. I was scared, but also felt this sense of relief. With a pat on the shoulder from another mum in the room, I pulled myself together enough to walk out the doors to Matt’s arms. We stood there in the hallway, cuddling and crying, but it was the very best plan we could have had. Although the time dragged at certain points, we had each other”.
Finally the call came that her surgery was finished and that Harper was doing well.
“We basically ran to that hallway and held our breath every time the door opened. That moment felt the longest. I barely recognized her when they rolled her bed out past us. Her face was swollen and her head all wrapped up. But it wasn’t as terrible as I’d prepared myself for. When we got to her bedside in the PICU, she looked so beautiful. So peaceful. Just sleeping it all off. By that evening, she was ready for a bottle. Matt sat her up a little bit to burp her, and her eyes started scoping the room. She was watching the nurses, smiling at them, making them stop and chat to her on their way past. THIS was my Harper, this made me let out a sigh of relief. She was ok”.
At the nurse’s suggestion, Harper was left in the very capable hands of the nurses that night and Jessica went back to the hotel for a hot shower and a restful sleep, something that she does not regret.
Harper slept well, took her bottles well and barely needed pain medication.
Upon removing the head dressing, Jessica says “I don’t like seeing that kind of thing and when it came off I looked away, but Matt encouraged me to have a look. It was amazing. It was not horrifying, not scary in any way. It was clean, neat and it actually blew my mind how beautiful it looked”.
During Harper’s hospital stay, she remained peaceful, happy and close to her usual self.
Harper turned 1 recently and is a funny, happy, clever little girl, hitting all her milestones.
“We are incredibly grateful to the medical professionals” Jessica says. “After reading quite a few stories similar to mine that have resulted in an emergency c-section, it does make me hope for the future there can be a development in detection and monitoring of the potential signs of Craniosynostosis during pregnancy and maybe reduce the number of traumatic experiences. Throughout my pregnancy, I was told my baby’s head was large, and in hindsight it makes me wonder if that’s something that could have been flagged. I had never heard of Craniosynostosis before, even after 4 children, so I rather enjoy sharing our story. Thank you so much for giving us this opportunity to spread awareness.”
Update 8th July 2025 from Mum Jess:
“Harper’s story was featured 2 years ago, she just turned 3 and is absolutely thriving! She really enjoys her annual visits to the Sydney Children’s Hospital
She would also love to thank Craniofacial Australia for her beautiful birthday cards and Christmas cards every year they are beautiful and cherished by us all.”
Share This Story:
