Monthly Archives: January 2023

Image of a newborn baby lying on a bed, her eyes are closed.

Eliza’s legacy

After several miscarriages and a long IVF journey, parents Hannah and Mitch were overjoyed to learn they were pregnant. However, at a 29-week routine growth scan at their local hospital, doctors alerted them that something wasn’t right.   

Hannah and Mitch were quickly referred to meet with several specialists in Melbourne. A few days later, their unborn daughter, Eliza, was diagnosed with Autosomal Recessive Polycystic Kidney Disease (ARPKD), a rare genetic disorder that affects one in 20,000 children.   

At 38 weeks, a by chance run in with the hospital’s head nephrologist led to their cesarean being bought forward to the very next day.

Image of a newborn baby's foot, in a crib in hospital. There are many wires and tubes visible.Hannah shares, “When Eliza was born, her lungs collapsed, and she didn’t cry. It was overwhelming. Before we knew it, she was being whisked away to the Neonatal Intensive Care Unit to further stabilise her. I was able to give her a quick kiss on the forehead, and she was taken away. I felt so helpless lying in the hospital bed, waiting, and not knowing if our baby had lived or died.” 

After a sleepless night worrying about their little girl, Mitch and Hannah were given the news they could see Eliza again.

“She was in a little crib with every wire and machine around her. Her little body was vibrating in line with the life supporting ventilator.

It was terrifying and overwhelming, but we were so in love with her, we saw past all the equipment and just focused on our little girl.”  

A woman is standing in a hospital room, watching over her baby in a crib. There are many machines and wires visible.

Eliza was transferred to the Royal Children’s Hospital Neonatal Intensive Care Unit (NICU), and after several big weeks of uncertainty, surgeries, tests and checkups, she began to turn a corner.  

“Her eyes opened, and she was able to move around and kick. With support from the nursing team, we could perform small cares for her and change her nappy. We began to feel like we could be more like ‘real’ parents. Then, on Mother’s Day, at 6 weeks old, I was given the best gift when I was able to hold Eliza for the first time, it was a mammoth effort moving her, still attached to life support equipment.

Mitch got to hold her the next day; it was amazing to watch Eliza in his arms, it just filled our souls.” 

The family were preparing to bring Eliza home and setting up their farmhouse in rural Northeast Victoria to be purpose-fit for her complex needs. Mitch was working tirelessly to support the family, working long shifts then driving the distance back to Melbourne to be with Hannah and Eliza.  

“You could tell that she just wanted to come home, she wanted to be with us. She was such a little fighter, she was fighting just as hard as we were to get her better.” 

A woman is sitting in a chair, holding her baby girl who has visible medical tubes attached. Her dad is standing to the side, they are both looking at the baby and smiling.

Unfortunately, Eliza never got to go home. At almost three months old, Eliza’s condition deteriorated, and she was moved to the Pediatric Intensive Care Unit, where she spent her final days with Hannah and Mitch by her side.

Hannah recalls the moments after Eliza died, “It was as if time had stopped as she rested in my arms, we were in absolute disbelief, how could this be happening?”.  

When it came time to leave the hospital that night, the couple gently kissed Eliza’s forehead and Hannah handed Eliza to a treasured nurse who had been with them throughout their journey.  

“I remember seeing my baby girl leave the room and I lost all feeling in my legs, I screamed and just fell to the floor in a mess of tears, it was so hard having to let her go.” 

The Royal Children’s Hospital referred Mitch and Hannah to Very Special Kids, and the family soon met their family support practitioner, Jenny.  

“I will never forget Jenny coming to visit us for the first time. She was just amazing. It was like we’d known her forever; she was so warm, embracing, and empathetic to what we had been through. She became the light in the darkest of days, Jenny was our lifesaver.” 

“Living in a small rural community, we were already quite isolated, so it has meant a lot to be invited and included. We’ve met some of the most beautiful people through Very Special Kids and gained some of the most heartfelt relationships with other bereaved families. We talk freely about Eliza, and they can talk and share with us their children. It’s so important to everyone that our precious children are remembered, and we reflect on their lives, their journeys and their memories.“ 

Mitch and Hannah attended the Very Special Kids’ Bereaved Parent Weekend in May 2022. The retreat offers a safe and welcoming environment for bereaved parents to share memories of their children, feel joy and express sadness with others who understand and can validate their emotions.

Two images - one of lit candles in a bowl, and one of a group of adults walking on a trail outdoors.

“We were a little apprehensive, unsure of what to expect, worried about possibly breaking down in front of others but we were blown away with how supportive and healing the weekend was. It felt like we were able to spend a weekend with our children, to talk freely about them, our experiences, their memory, our grief, the loneliness and to express our love for our children in a safe and supportive way.” 

 “At the close of the weekend, we left feeling like we were able to breathe a little lighter again, like we’d been supported to enable us to let out a little of what we hold so deeply within.” 

Each day, Mitch and Hannah give back to the community and honor Eliza’s memory in their roles as nurses. A profession Mitch was already enrolled in, and Hannah took up after Eliza’s death.   

Eliza's memory_BeachV2Reflecting on the daily impact Eliza has on their lives, Hannah shares, “as a couple we have vowed to keep Eliza’s legacy alive because she didn’t get to have the life we had hoped for her. We’ve got the most amazing platform now as nurses that we can go and do beautiful things for people, and it’s our way of paying tribute to Eliza and to these other beautiful children that we feel like we’ve met along this journey.” 

In time, something I would like to explore with my career, when I feel strong enough, is to be able to undertake the necessary training so that one day, I may be privileged enough to walk alongside bereaved families as well, because I just know how having Very Special Kids walk alongside us has made the difference for us. We cannot thank Very Special Kids’ enough for the opportunity to share Eliza’s story and for the love and support they have shown us on this journey.”  

Image of a young woman smiling at the camera holding a small while dog.

Meet Youth Advisory Group member Maryjo

The Youth Advisory Group (YAG) is a new initiative that provides very special siblings between the ages of 14 to 25 a platform to be heard. The group is made up of nine enthusiastic, motivated, and inspiring young adult and adolescent siblings eager to express their thoughts and ideas in bold, creative ways.

In this series, our Youth Advisory Group members have interviewed each other to learn a bit more about their day-to-day life experiences and time with Very Special Kids.

Could you give me your name, age, and current level of education? 
Maryjo (MJ), 24 years old, I have graduated from a Bachelor of Biomedical Science and am currently working as a medical receptionist. 

What is a fun fact about yourself?  
I’m a very artistic person who enjoys doing various types of crafts including origami, that I hope to teach many Very Special Kids members soon at the next family event. 

If you feel safe doing so, could you share a bit about your sibling and their story? 
My little brother James is the reason we became a part of and continue to be involved in Very Special Kids. He loved his Lego, Lamborghinis and Fast and Furious movies. Even though he was only 18 months younger than me, he would always protect me and stand up for me.  

He is and continues to watch over me from heaven. He was diagnosed with cancer in 2013 and passed away in 2015. We continue to be a part of Very Special Kids to keep his memory alive by connecting with other families who understand illness and grief. 

What would you say to other Very Special Kids’ adolescents thinking about coming along to an adolescent activity? 
My best advice to adolescents wanting to attend an adolescent camp or activity day is that no matter how nervous you may be to attend your first program, you will make friendships and memories with people that you will remember forever.