A Mother's Journey
by Sarika Guymer
The Guymer family travelled to Adelaide earlier this year so that the then-eight-month old Milan could undergo surgery for sagittal synostosis. Their story, written by mother Sarika, follows a similar pattern to many families with children born with craniosynostosis or other abnormalities, with the additional obstacle posed by the ban of apparently “elective” surgery as a result of the Covid-19 pandemic. The Guymers are just one of the families Craniofacial Australia provides financial support for, whether it be for surgical costs, travel or accommodation.
Milan’s craniosynostosis journey was a long road with many medical professionals, opinions and finally answers and relief! It all started in September of 2019 in the delivery room. After a longer than usual labour Milan was earthside. Within an hour of his birth one of the midwives approached me and suggested I visit an Osteopath, explain the birth to them and have a good feel of his head.
Six days old and our first experience seeing an Osteopath. She mentioned the word craniosynostosis and strongly suggested seeing our GP to request imaging. Being a new mum and having concerns for my son's head was so overwhelming, I went home, started on Dr Google and very quickly scared myself. First thing the next day I made an appointment with my GP. After a quick consult, I was dismissed of any concern and told my son did not need any imaging...
but I had the gut feeling that every mum knows and feels deep to her core when something is slightly amiss with their child.
Seven different GPs later I was able to get a referral for my Milan to have an ultrasound on his head at our local hospital. The report came back completely normal and showed no abnormalities. Again that gut feeling returned, so I picked up the phone in search of a GP that knew this condition and could help me either seek more information or rule out a diagnosis.
One more appointment with a new GP we finally found local help who was open and willing to listen to me and the concerns I had held for Milan for the past three and a half months. He wrote a referral to see a specialist at our nearest craniofacial clinic. By this time it was a few days before Christmas and my concerns for Milan had increased as he grew and the shape of his head looked less and less like other childrens’.
After meeting with the specialists at the craniofacial clinic my husband and I were told almost instantly Milan presented with a classic case of sagittal craniosynostosis and would require surgery to correct and allow his brain room to grow. The drive home was some of the longest four hours of my life, repeating the doctor’s words over and over and thinking of the potential trauma Milan would have to endure. Yet again my gut feeling went into overdrive, sending me on a journey to seek a second opinion. It was from searching Facebook I came across Craniosynostosis Support Australia, and what a wealth of knowledge and support this group was. Through the beautiful mothers on this page I learned that Australia's only specialised craniofacial clinic was in Adelaide, and of the Adelaide Craniofacial Centre. With not so much as two weeks’ notice over the Christmas/New Year’s break I got in contact with Deborah the practice manager, who is an absolute gem of a person, and was able to secure an appointment to meet Mr Grave.
The second my husband, Milan and I left that appointment I felt like someone understood my fears as a parent and could not only confidently provide the medical solutions we needed but would also show great care and kindness toward our beautiful Milan too.
The next step was going to Adelaide to have all the required tests and meet the medical team that would be caring for Milan. Once again, every single appointment, doctor and interaction we had was nothing short of brilliant. The hope and faith we felt made me know this was the right team for us as a family.
Three weeks before our scheduled surgery date a massive curveball by the name of Covid come our way. The moment I saw Scott Morrison say the words “elective surgery shutdown’’, my heart sank. If it were not for the support I had from Milan's surgeons and the friends I had made through the Facebook support page Milan’s surgery would have been delayed for much longer than three months. After lots of back and forth and pleading our case with the hospital we were finally given the green light for Milan to have his procedure in June.
Our two weeks in self-isolation flew by. The night before surgery I had butterflies in my stomach and found it really hard to sleep. I genuinely believe Milan knew what was happening as he woke at 3am (which he never would normally do) and played with us until it was time to leave for the hospital at 6am. It was the most beautiful time enjoying cuddles with our baby boy.
6am – We arrived at day of surgery admission with our suitcase packed and ready for the next four nights. We did all the standard checks with the nurses, changed him into his gown and waited for his name to be called.
As soon as the theatre nurses called his name, Milan and I proceeded to the theatre where I got to hold him to sleep. As his parent, this was one of the toughest things I've ever had to do, but the faith and trust I have in the team looking after Milan never led me to question if he would be OK or not.
Then we waited…
Four or five hours later his surgeons came out and assured us everything went perfect and he was in PICU and we could go in and see him. The weight of the world was lifted off my shoulders. Within a few hours of seeing Milan I was able to hold him and feed him, I found that bond so important for us during this time as it was comforting for not only him but me also.
Over the course of the first night Milan’s eyes swelled shut and he was on pain relief so we spent our time feeding and cuddling. On the third night one of his eyes opened and the next morning the second opened. Once this happened I felt like he had turned a corner in his recovery. He was back to smiling, only on Panadol and eating and crawling around. The strength babies have who undergo this procedure defies belief! A few days later and we were headed back to our home away from home. When you leave the hospital all the nurses and your surgical team will remind you to treat your child like any other baby and they are OK. As a parent, heeding that advice is something completely different. If it weren’t for our epic support system I think I would have actually wrapped him in cotton wool.
Watching Milan recover day by day and return to meeting all his milestones has filled me with so much joy. He was so quickly back to his bubbly self and ready to climb on and get into everything all over again!
I am so thankful that we chose Mr Grave and Dr Abou-Hamden to care for our son.
Craniofacial Australia’s support has been a saving grace for our family through what was already a very tough time.
Words do not exist to express my gratitude to them for everything they do.
Updates from the Foundation
In July we said farewell to two of our long-standing Board Members, surgeon Walter Flapper, who served on the Board since 2013, and Trevor Edmond, who served from 2018. We thank them both for their service and wish them the very best going forward. Their invaluable guidance will be sorely missed!
"Trevor and Walter provided tremendous service and knowledge to Craniofacial Australia during a time of significant change for the Foundation. Their guidance was much appreciated, and I wish them both the very best and look forward to their continuing indirect involvement in Craniofacial Australia."
- Professor David David AC, Chairman
Meet Our New Board Members
David Smith, QC
Mr Smith brings more than forty years’ experience of practising law to the Board, and served sixteen years as a Judge at the District Court of South Australia until his retirement in 2015. He currently works as a Mediator and consultant with Jeffcott Chambers.
Mr Benjamin Grave
Mr Grave is a craniofacial surgeon who consults at the Women’s and Children’s Hospital. Mr Grave has worked closely with Professor David, and was also a beneficiary of our educational program with Macquarie University, achieving a Master of Advanced Surgery in Cranio-Maxillofacial Surgery in 2014.
Welcome to the Team
Amanda Haskard
We also welcome Amanda Haskard to the role of Corporate Manager. Amanda brings seven years' experience working in the not-for-profit sector, having previously worked at the Cora Barclay Centre, and has a great passion for supporting the most vulnerable members of our society. Amanda started in her role with Craniofacial Australia in June, and her wonderfully positive presence has already made a great impact on our small team.
Save the Date
Our Annual General Meeting for 2020 is being held on November 18, 6pm at 226 Melbourne Street. Members have the opportunity to vote at our AGM, so if you would like to become a member, please enquire with us via:
email: info@acmff.org.au
or phone: (08) 8267 4128
Thank you to our Supporters!
Many of the blankets, toys and various other items we send in our Welcome Packs are donated to us from different communities around Australia. Most recently, we were sent a selection of adorable baby-sized “Cranio Warrior” T-shirts designed and printed by the talented Jamie Sheehan. Jamie is an active community member of support groups for families with children who suffer from Craniosynostosis, and has even set up her own Cranio Warriors Australia Facebook page, dedicated to celebrating “the bravery and resilience of Cranio Warriors and help increase awareness for Craniosynostosis”.
If you have a child scheduled for craniofacial surgery, and you didn’t receive one of these T-shirts in your Craniofacial Australia care package, you can get in touch with Jamie via Facebook – go to the Cranio Warriors Australia Facebook page.
Jamie makes the T-shirts in her own time and for the benefit of the community, so she may not be able to fulfil everyone’s requests.
“Wow, to say we were overwhelmed with your generosity would be an understatement. Thank you so much!”
- Michelle, one of our Welcome Pack recipients
Research Grants
Craniofacial Australia is excited to announce a new partnership with Associate Professor Quenten Schwarz from UniSA’s Neurovascular Research Laboratory. Associate Professor Schwarz researches the growth of the craniofacial skeleton, with particular interest in identifying the biological programs that fail in craniofacial disorders. Their recent work has found new biological tools and dietary supplements that have the ability to expand the number and size of the cells that form the building blocks of the jaw.
Working in partnership with Craniofacial Australia they are now exploring the possibility that application of these biological tools, or simple dietary changes, can be used as a therapy and/or preventive measures for craniofacial defects in animal models. We wish Associate Professor Schwarz all the best as the project progresses and look forward to updating our Craniofacial Australia community with outcomes as they develop.
Craniofacial Australia is opening up for Research Grant applications for our December round.
We are on the lookout for exciting new projects that push the boundaries of what is possible in craniofacial surgery and patient care. To apply, contact us at info@acmff.org.au.
If you are interested in funding one of our research grants, please get in touch with us, or email us at: