Monthly Archives: June 2018

One day at a time

Three-year-old Breana is a very cheeky, happy child, that lights up any room she is in. She loves music and dancing, and she loves receiving attention.

Breana however, lives with a life-threatening condition, which makes every day a little uncertain for her family.

Breana was diagnosed with DiGeorge Syndrome only a couple of days after she was born, which is a syndrome caused by the deletion of a small segment of chromosome 22. While the symptoms can be variable, they often include congenital heart problems, specific facial features, frequent infections, developmental delay, learning problems and cleft palate.

In the first two weeks of her life Breana had open heart surgery and surgery to repair her laryngeal web.

Her parents were aware of heart defects in their 14th week of pregnancy but all the other issues came as a completely devastating shock. Breana, is now unable to eat orally, she cannot walk, talk or hear properly, her immune system does not work and she has severe breathing problems.

“In the first 5 days of her life, I felt like every time I used to see her in the ICU,there was another specialist waiting there to tell me something I didn’t want to hear. Her heart was a lot worse than what we were expecting” explains Breana’s mum, Nicole.

After four and half months in the hospital, Breana was finally home with her siblings, George now 10, Jason 7, and Adelyn 6.

Breana has celebrated three of her very important milestones in hospital. On Christmas Day in 2014 it was the very first day she was able to breath on her own. She also celebrated her first two birthdays in the hospital. Breana’s first cardiologist didn’t think she would make it to the age of three, however she turned three last year and got the chance to celebrate with her family at home.

“She is very determined and strong willed. She idolises her siblings, she follows them around as much as she can and she tries to play with them all the time. It’s like she can tell the time because she always looks out the front door when she knows they will be coming home from school. Because she is non-verbal we’ve also started practicing sign language which is going well” says Nicole.

The Zois family were referred to Very Special Kids in 2016 which meant the family could recharge their batteries and have a little normality back in their lives. Very Special Kids provides Victoria’s only children’s hospice where children with life-threatening conditions can receive specialised 24 hour care in a home like environment, and families can have some much needed respite.

“Breana loves the hospice, when we walk through the door she is all smiles and can’t wait to interact with people. She feels at home, which is very important for us” explains Nicole.

Having a sibling with a rare genetic condition, can deeply affect a child.

“It’s been really hard for Breana’s siblings, especially because of their ages. They have had to miss out on a lot of things since she was born, we have pretty much spent nearly every school holidays in hospital. George being that little bit older worries about her a lot, and he asks a lot of questions about if she is going to die every time she gets sick, he gets really anxious” explains Nicole.

George, Jason and Adelyn love attending Very Special Kids Sibling Days, it’s their chance to be kids, explore their emotions and reduce any sense of isolation with other kids facing similar challenges.

Very Special Kids also offers family accommodation where parents can stay in picturesque Malvern free-of-charge for a nice escape with their whole family while their child is safe in the hospice next door.

“It is such a huge relief to know Breana is being so well looked after with Very Special Kids. I don’t have to worry for that period of time, I can finally switch my brain off and relax a bit.”

The Zois family also receive counselling support provided by Very Special Kids, which they find invaluable.

“Pauline’s support is fantastic, we are always in regular contact, and if I am having a bad day I can pick up the phone whenever and chat to her. She does a lot of home visits too. The kids love her and always ask when she’ll come over again” says Nicole.

“Knowing that Very Special Kids is there has helped us get through so many tough times. Breana still requires at least one more open heart surgery but she’s not suitable for it at the moment, and we don’t know if and when she will be. We just have to take it one day at a time.”

The sky is the limit

Written by Paula Mullin, Clinical Nurse at Very Special Kids

I have been working at Very Special Kids for the past four years and I often get asked “how do you work in paediatric palliative care?”

I do what I do because I have the chance to help support families at the most difficult time: caring for a child at the end of their life. If I can help relieve just a small part of that pain and anxiety then I feel that I have fulfilled my duty to that child and their family.

To me paediatric palliative care seeks to relieve the physical, emotional, social and spiritual distress that families experience with a child that has a life-threatening condition. It is about how to help them make the most of each day and enhance their quality of life.

At Very Special Kids we create special art and help fulfil bucket lists. Making memories as well as sharing these families’ anxieties and fears creates a strong bond. I feel privileged that families trust me to be a part of this journey.

At Very Special Kids we say the sky is the limit, no ask is too big. If we can make it happen, we will.

Even with all sadness and anguish lived, I also experience the feeling of accomplishment. I believe that here at Very Special Kids we do our best in helping a child at the end of their life and their family.

The most rewarding part of my experiences, is caring for all of the amazing families and the most inspiring children. To understand that the family needs to experience the grief stages and strive to help them go through as best they can, is how I do what I do.

Parenting adolescents

Written by Roni Collyer, Family Support Practitioner at Very Special Kids  

Adolescence is a life stage characterised by intense change; it is the transition between childhood and adulthood. While there is not one ‘correct’ way to parent young people, the following suggestions might help foster understanding and communication with your adolescent child:

  • Acknowledge your adolescent’s thoughts and feelings. It’s important for young people to express their emotions in ways that feel comfortable to them. Your adolescent might want to talk to you, a friend, counsellor or prefer privacy: let your young person lead conversations about feelings. Remember that if it seems they aren’t open to support, it doesn’t mean they don’t care.
  • Be available to your adolescent child; be consistent and make time to talk about how they might be feeling and answer questions. Demonstrate your genuine interest and support by checking in regularly. Adolescents often experience a range of emotions and shift between moods quickly. If your child doesn’t accept support, try to be understanding of this and continue to be available.
  • Remember that young people value honesty; try to include them in decision making when possible, or make time to subsequently explain any choices which impact your adolescent child. This helps young people feel that their thoughts are important and appreciated within the family. When given an opportunity to feel heard, young people will often be able to identify their own solutions to problems they are experiencing.
  • Peer relationships are an importance source of support for young people. Remember that your child may not want to speak with you about how they’re feeling, but prefer to talk to a trusted friend instead. Some adolescents may not know anyone else who has a sibling with a life-limiting illness, and may feel isolated in this experience. It might be helpful to connect your child with other young people who know what it’s like.
  • If you notice your adolescent child is withdrawn or distressed for an extended period of time, seek additional support.

It takes a village to raise a child

My baby was going to die and I needed help.
We could not survive this journey alone.
Very Special Kids welcomed us into their care and we became Team Jack.

jack

My son Jack was diagnosed with Spinal Muscular Atrophy. The muscles in his tiny body
were wasting away. One moment I was holding my beautiful baby boy, the next every hope and dream I had for his life came crashing down. I was told he wouldn’t survive past two. Have you heard the saying it takes a village to raise a child? Well Jack was a very special child and we needed a very special village. Jack needs 24 hour complex care and without the free counselling, support and respite I receive from  Very Special Kids, I don’t think Jack or I would have survived the last 16 years.

We have defied the odds and no matter how turbulent and unpredictable Jack’s illness has been, the support and care we receive from the team at Very Special Kids has remained constant and invaluable to my entire family.

Lisa – Mum and Captain of Team Jack

“The compassion and kindness you are greeted with at every point is unwavering and it’s been this way for 16 years. When Jack’s time comes I know we will have the support we need to make it through.”

jack2

“Everyone knows him inside and out. Not only do they care for his complex medical needs, but they understand him. They know his quirks, his fears, they know Jack. They love Jack.”

To support children like Jack, please click here.