Meet cranio-warrior Hazel

Our beautiful daughter Hazel was born on March 16 2021. Every parent says it but it was truly one of the best days of our lives. Although she was perfect to us, my husband and I knew that something was a little different about Hazel. We couldn’t feel her fontanel very well unlike her brothers which was ginormous and bounding! Like a lot of us do, we trusted the medical system and accepted that everything was ok. She was the perfect little treasure for us to love and adore, and we took her home, wrapped her up in love and tried to push our worries aside. 

Hazel was a quiet little baby girl and when she was just shy of six months old, my husband and I realised that our thoughts about her fontanel and skull were coming true. As she was growing, her face was sinking in on the right-hand side and a rise in her right eye socket was causing an obvious head tilt. Her carers at her beautiful day care had also expressed with extreme sensitivity some concerns with her development and milestones in comparison to her little friends. We knew as her parents that we had to fiercely advocate for Hazel, and we insisted on further investigations. We saw our GP and were referred to our local hospital. 

In June 2022, Hazel had a CT brain scan under sedation which revealed our suspicions, that she had craniosynostosis. Craniosynostosis is a birth defect where the bones in a baby’s skull have fused together too early. This can cause many problems as a baby’s developing brain doesn’t have the room it needs to grow. This diagnosis, while seeming absolutely devastating at the time, also came with a small sense of relief for us. Having a diagnosis affords the ability for action, and after months of worry for Hazel, we knew this diagnosis meant we could help her. As a parent, that is all you want for your children.  

Having no local facility to rectify craniosynostosis, on 21 July 2022, my husband, Hazel and I flew to Victoria to prepare for our upcoming consultation at the RCH. Hazel patiently waited, watching and admiring the meerkats which she adored and the fish in the main foyer. These might seem like a novelty for some and probably even to us at the time, but we would later discover the power and comfort of their existence post-surgery where you couldn’t escape from the hospital, they were such a blessing.

Our initial consultation with the surgery team was on the 22 July 2022. Even as a registered nurse, sitting in this consultation room among these clinicians holding Hazel seemed incredibly daunting. These feelings of trepidation and overwhelm were, however, put immediately at ease by Hazel’s treating team. In those initial moments we didn’t only see these clinicians as experts in their field, we saw them as fellow human beings who saw us as petrified parents, and while their expert medical opinions and skillset were not lost on us, it was their interpersonal skills and genuine display of care, compassion and concern for not only Hazel, but for us as her parents, that brought us such comfort. I am not too proud to say that in that initial consultation there were moments where I felt like the floor had been taken out from under me, like I couldn’t breathe, and when tears escaped me, the comfort and nurture provided by Hazel’s team only amplified. We also saw an Ophthalmologist for Hazel’s eyesight who also showed excellence in their field and such care and compassion for Hazel.  

We felt as parents so conflicted. To be completely transparent, we didn’t want to be there, didn’t want our daughter to face this huge journey, and yet we felt simultaneously incredibly lucky that Hazel was accessing (in our opinion) the very best healthcare in the world. Perhaps if we lived somewhere else in the world Hazel wouldn’t have this opportunity, and to us as her parents this didn’t seem like an option we wanted to take. We then had to fill out lots of paperwork and have some baseline investigations completed such as 3D photographs. This technology fascinated my husband and I – Hazel not so much! This modelling allowed a comprehensive diagnosis and surgical plan moving forward as well as means to track her progress post-operatively. 

It was confirmed by the RCH that Hazel did in fact have craniosynostosis by nature of single suture and that she would benefit from bifrontal orbital remodeling and advancement. This would allow Hazel’s frontal brain room for growth. The decision for Hazel to have surgery was a shared decision between the treatment team, my husband and me. Every detail of the surgery was explained to us. We were told that Hazel would require a blood transfusion as well as face the risks of relapse, infection, redo surgery, coronal scarring, possible bone loss as well as all the ‘scary items’, like a cerebrospinal fluid leak, dural tear, air embolus and possibly death. Our heads were scrambling and everything seemed like it was going in slow motion like a movie but we always felt we had options. The RCH was offering us a solution so we grabbed it with both hands and agreed for our little “cranio-warrior” to have surgery. We flew back to our friends and family in Tasmania and started to process what we as a family unit were about to face. We also needed time to organise the logistics as Hazel also had three beautiful siblings that we had to organise care for at home. 

On 28 August we flew to Melbourne and checked into The Ronald McDonald House, our home away from home, and settled in. The night before her surgery, we bathed Hazel together and had dinner and settled ‘our baby’ in her cot with a bottle in the fading light at Ronald McDonald House. As I watched her fall asleep, I prayed that her surgery would be a success and that her life would be continued to live, with us, the way that it was always intended.  

On the day of surgery, we got up early to our alarm. We fasted alongside Hazel and took her the short distance from Ronald McDonald House to the RCH. Due to the covid restrictions at the time, only one of us was allowed to proceed to the surgical waiting area with Hazel. While understandable, this really hurt our hearts. As I watched my husband kiss and hug his daughter in front of the fish tank in the main foyer of the RCH, my heart shattered into a million pieces. I prayed that they would be hugging and kissing each other again soon in recovery. I took Hazel into the preadmission surgical area. The staff were incredibly amazing and sensitive to the fact that Hazel was having such big surgery. I felt incredibly vulnerable that Hazel was having surgery on her skull and near her brain. It petrified me. But the staff were always incredibly comforting. I asked for Hazel to have a premed so that she was as calm as could be prior to going under. I didn’t want our daughter to be traumatised any more than she had to be, and this request was afforded to us without any question and Hazel gratefully remained calm. We were then wheeled into the anaesthetic area. What I found incredibly empowering about our experience with the RCH was that at every step of the way we were consulted with and asked what our preferences were for Hazel.  My husband and I were considered the experts, we always felt like we were a part of the ‘panel’ or ‘team’. There was always a strong therapeutic relationship. We did not feel the effects of a hierarchy at any time. This was obvious after we had been taken into the anaesthetic holding area where I was asked my preference for how I wished Hazel to ‘go to sleep’. They again gave me options. Whatever I felt comfortable with. They gave me the option of going, with her being awake if that was less traumatic for me. Unbelievably, the team gave me the grace and time of holding my daughter, singing her to sleep with her bedtime ‘falling asleep’ song, and I couldn’t have been more grateful. Hazel fell asleep in my arms, to her bedtime song, and I like to think to this day that she went into that surgery without any fear whatsoever, and I believe that it was due to her clinicians affording me choices as her mother, and their respect for Hazel and I, that allowed this to happen. I left that room, through the double doors, having held all my fear and emotion in and away from Hazel. It sounds incredibly dramatic when I say this, but I literally went to collapse. I couldn’t breathe through my mask and this sound erupted from me that I didn’t even recognise. I had no idea but there was always going to be a nurse who was awaiting me on the other side. She literally caught me. She caught me in my biggest moment of vulnerability as a mother to date. She caught me and held me and treated me like a mother with a broken heart. I don’t even know her name, I don’t even know what she looks like because of her N95 mask, and yet she will always hold a special place in my heart because she held me when my husband couldn’t due to COVID. This surgery was, and always will be about Hazel. But the staff at the RCH always treated my husband and I with equal regard, care, and compassion. I am grateful for every single nurse in that incredible hospital. They are angels walking amongst the living and made such a difference to Hazel and our family. 

The next six to eight hours were nothing short of tortuous for my husband and I. I wanted to remain in the hospital grounds but the surgeon soothed me and suggested it would be best if my husband and I left the hospital and tried to get some sunshine and some food knowing that we would have a big few days ahead of us with Hazel’s recovery. We have some family and friends who live in Melbourne, and they gratefully came and sat with us and held our hands and hearts in this time. We were told to have our phones on us and that we would be updated at any possible opportunity which I trusted and got comfort from. We were having lunch nearby when my phone rang. It was Hazel’s Head Neurosurgeon. She said that her part of the operation had been successful and that now the other surgeon was remodelling her skull. In our minds, this was a huge relief as there was a heightened risk when separating the brain from the skull. In our minds, we were ‘halfway through’. The last surgeon called to say he had just finished his part of the operation and Hazel was being ‘closed up’ as we spoke. He explained that the operation was  successful, and that he made comment that when the previous surgeon made ‘the cut’, the brain surged forward as if it was taking a big breath like ‘oh thank goodness there is some room now’, this made us teary because as parents we knew in that moment that we had in fact made the very best decision for Hazel for her surgery no matter how difficult her recovery was going to be. His use of language such as ‘your beautiful daughter’ soothed me, because he was always so personal. It was always so personal. And it made such a difference.  

If I thought that hearing about Hazel’s initial diagnosis was difficult, or leaving her pre-surgery was hard, nothing could prepare us for what we saw in recovery, even though we had been well informed and warned by her treating team. Seeing your baby in that bed, with her face already so swollen, like she had been in an assault, is a sight that I will never be able to get out of my mind. It took the wind from me, and I couldn’t breathe. I choked up and just kept saying “oh Hazel!”. Obviously seeing that I was distressed the incredible recovery staff allowed my husband to come in to be with us. She was still asleep. She had all the attachments in – she had a central venous catheter in her neck, two peripheral intravenous cannulas in her hand and foot, she had pain management, fluids and prophylactic antibiotics running. Her hair had been shaved and a jagged scar that ran between each ear remained with a terrible mullet – albeit quite fashionable now! She also had a little specimen pot next to her with some of her hair, as her surgeon had been so thoughtful to save her hair as in an earlier consultation he had asked if Hazel had had her ‘first haircut’ which she had not, so he had taken the time to save some hair for us as a ‘nod’ to her first haircut which was incredibly touching to us and still chokes me up when I think of this. It was a lot to take in and confronting to see. She was having a little difficulty in ‘coming to’ so we luckily were able to give her a cuddle. It was hearing her daddy’s voice that she started to briefly open her eyes. We were taken to the ward a few hours later. We were settled in very well to the Platypus Ward. The staff were incredible, especially the night shift nurse we had for the first three nights. She held our hearts in those long, lonely nights. That nightshift nurse was so much more than a nurse to us. She was our saviour and provided Hazel and I so much reassurance and comfort.  

We were prepared by the team that Hazel’s next few days would be difficult for her as she would begin to swell and would lose her ability to see. We were informed that her discomfort would mostly be due to her inability to see versus her pain levels which did provide us with some comfort. While we had all this information given to us and thought we were well prepared; it still took our breath away and seeing her in such distress really was difficult for us to see and endure as her parents. Our worst moment in hospital would have been possibly day two post-op after Hazel had had a day nap. She had some increased swelling, truly looking like an alien of sorts, and there was concern that it was a post-op brain bleed, however this was soon discovered to be untrue. Prior to discharge, Hazel’s surgeon went out of his way and spent so much time with us explaining the intricacies of the surgery and all the reasons why she was so incredibly swollen. He provided us with so much comfort and clinical reasoning and reassurance which made us relax as best we could in this situation. Hazel’s recovery on the ward was excruciating to watch, but she was so very brave, we were blown away by her resilience and incredibly, she comforted us in so many moments! Even when she couldn’t see, and was so swollen, she brought her daddy in for a cuddle and patted his shoulder as if to say, ‘I’m ok dad, everything is ok”. Although we didn’t use the service, my husband and I were offered counselling by the social work team, which I thought was an incredible service to offer when you are enduring the trauma of a loved one. What I loved about the RCH was that the hospital and the surrounds were a healing environment – as best as hospital can be! The fish tank and meerkats were a wonderful distraction for Hazel (and us!) as well as the hospital grounds which gave us a sense of freedom and of being in nature which we appreciated. Hazel continued to make a strong, steady recovery and we were discharged back to Ronald McDonald House for one week before our next consultation. We were discharged with the reassurance that we could present at any given time or call or email whenever we needed to. Hazel’s scar developed some redness, and we were worried about an infection, and we presented to emergency where Four surgeon met with us immediately, providing reassurance and guidance as to how to best help Hazel. One week after Hazel’s surgery we met with her team and were discharged and given flight clearance back home! We had never been so happy to hear this news as it meant we could take our girl home, to our family, where the real healing could begin. We have since flown back for consultations in person as well as telehealth appointments. The My RCH Portal has been invaluable to us and allowed us to manage our appointments and correspondence easily with the hospital. And, as true to promise when we have emailed Hazel’s team, they have emailed back immediately which we appreciate. Having an open line of communication with the RCH, especially early on in her recovery was incredibly comforting for us, we appreciated the personal nature of this very much as it seemed to help soothe the discomfort of being so far away from them if Hazel needed them. 

It’s coming up to two years post-op now. As I am writing this piece, I am looking at our beautiful daughter who has not only made a full recovery but is absolutely thriving! She has come out of her shell so much. Hazel is a vibrant, happy, healthy, and sassy little girl full of personality and life thanks to the incredible team at the RCH. She is meeting all her developmental milestones, and I couldn’t imagine the life that Hazel would have had if she hadn’t had this opportunity for craniofacial surgery at the RCH. Our overall experience was above exceptional. The Royal Children’s Hospital single handedly afforded Hazel the life that she deserves and simply would not have had, had she not had surgery. The RCH changed our lives for the better. We are forever in debt to the RCH team and hold them in the highest regard. We feel incredibly lucky that Hazel can continue to thrive and develop while continuing to be under their care and guidance well into the future.  

To Hazel’s treating team and all the incredible staff at the RCH – to us, Hazel isn’t just a patient. She is our world. We sincerely thank you for seeing us for more than a patient UR number, for seeing Hazel as a little girl who needed the opportunity to thrive, for giving her the gift of health and life and every opportunity for her to shoot for the stars. 

And lastly, with sensitivity, we would like to acknowledge that we are one of the ‘lucky’ families. Having spent time at the RCH, and meeting many other families there, we understand that not everyone gets the privilege to take their children home or have the ‘happy ending’ that Hazel was gifted. We feel incredibly fortunate that Hazel had a positive outcome and would like to send our best wishes and thoughts to those families whom this is not the case. For all of the families who are there currently, we are with you in spirit and wishing for the positive health outcomes and peace of your loved ones.  

By Maddy and Gerard, Mummy and Daddy of Hazel, our Cranio-Warrior!  

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