On Sunday, 25 October, the Soong family will be our angel family, sharing Arlyn’s story and leading our Two Feet & A Heartbeat walk in Perth.
Arlyn spent her first weeks of life in hospital after an echocardiogram revealed a large Patent Ductus Arteriosus (PDA). At just one month old, she underwent surgery to close her PDA and went on to thrive, bringing so much love and joy to her family.
Sadly, at four years old, Arlyn passed away unexpectedly in her sleep. Her father, Calvin, shares her story and how HeartKids supported their family throughout Arlyn’s journey and continues to walk alongside them today.
Can you tell us about your family’s journey with CoHD?
Arlyn is our first born and naturally, we were overwhelmed, as first time parents are. Things were complicated by a longer stay in Saint John of God Subiaco Hospital special care nursery when she came into the world on April 4 2019. We thought she was beautiful and couldn’t wait to give her cuddles. She was born small, difficult to rouse and maintain alertness, and as a result didn’t feed very well.
She had an echocardiogram in her first week which revealed a large Patent Ductus Arteriosus (PDA). She was transferred to the Perth Children’s Hospital (PCH) NICU where she spent the next 2 weeks under the team there. After many discussions, we came to know more about PDA and that Arlyn needed surgery to close it. But she was too small!
We brought her home on April 20 and had her at home for about a week and half before she started to find it difficult to breathe due to the large PDA. We went back to PCH and she had surgery at just one month old – posterolateral thoracotomy for PDA ligation performed by Dr David Andrews. Seeing her go into theatre was so difficult but the team were so lovely. The surgery was a success though Arlyn had a longer than anticipated stay in ICU post operation.
From that surgery, Arlyn thrived. She put on a lot of weight once she was able to stay alert and take milk. She had the chubbiest cheeks and would smile when she saw us. She was a cuddler – she gave the best cuddles and we loved it when she would fall asleep in our arms. She was a groover and loved listening and dancing to music, particularly Emma Wiggle songs. She loved eating cucumbers, hated bananas, enjoyed pretend play and sitting in the swing, watching Peppa Pig and Bluey. She was quiet and often enjoyed sitting and observing the world around her. She became a big sister to twin brothers at 23 months old and she was the best big sister they could have asked for. She loved them and cared for them so well.
Arlyn enjoyed Sabbath School at North Perth SDA church and adored her Sabbath School teacher. She started Kindy and made some wonderful friends there. We were so proud of her and all that she was learning from her wonderful teachers. Over Arlyn’s four years with us, she had lots of hospital appointments and admissions for various other things, including monitoring of an Atrial Septal Defect (ASD).
Arlyn sadly passed away unexpectedly and suddenly on May 18 2023 in her sleep. We miss her every single day and remember the wonderful impact she had on us and the people around her.
How has HeartKids supported your family?
We were referred to HeartKids while in PCH and met a Family Support Coordinator- she was so lovely. It was so good to have support there to help us navigate our experience, particularly from someone who had experienced being a parent of a heart kid herself.
Over the years, they continued to support us when we had various follow up appointments and introduced us to Heart Beads which captured Arlyn’s journey with her CoHD.
When Arlyn died, the HeartKids team were so compassionate and supported us with that journey. The Heart Angels club is not a club you want to belong in, but I think everyone there needed that community where you could relate and understand the trauma of losing a child.
They still support us now and it helps us as a family keep a connection to Arlyn and her story.
What do you wish more people understood about childhood heart conditions?
How common CoHD is and how varied the conditions can be.
What would you say to another heart family?
Lean on the supports around you. Find your community that understands you and can relate to the journey you’re on. HeartKids and Heart Angels made such a difference in helping us find that space.
To support families like Arlyn’s, register to attend your local Two Feet & A Heartbeat walk today.
