A True Heart Warrior ~ Love in the face of adversity

Brace yourself and grab a tissue, this interview had me in tears! Discover how entrepreneur and mum Sarah Cassim and her family overcame the challenges of their unborn child’s serious heart condition.

What age was Wyatt when you discovered that he had a heart condition and what were the complications?

My husband and I were at my 18 week scan to find out what the gender of our baby was. During the ultrasound they noticed what was described as a significant hole in his heart. We were booked in to see a cardiology professor and it was then that we knew it was serious.

Confused and exhausted we sought advice on potential miscarriage risks. Termination was offered, but we both knew this was not an option for us. We decided that gaining as much information on the potential complications was the best way forward.

Wyatt was diagnosed with Tetralogy of Fallot (CHD – congenital heart disease), at Westmead Children’s Hospital. The cardiology department were angels, they supported my husband and I through the lowest time in our lives and many many tears.

The numerous visits into hospital knowing that once born Wyatt would need open heart surgery was absolutely harrowing and at just 4 months old that time came.

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Although we knew that our baby son was in the very capable hands of Dr Winlaw, the anxiety was simply overwhelming. Surgery took half a day and proceeding the operation 5 days of ice cold mats and an induced coma in ICU. There were times that we thought he may not pull through, but his little spirit was strong. This operation saved his life, without it it was unlikely he would have made it to age 1.

This was such an immensely challenging time for you, can you describe how you managed to find calm amidst the worry?

I ate A LOT of crunchie bars and cried! I consider myself pretty tough and I’m not a person who usually cries very often, but this affected me so much emotionally that I would literally combust into an eruption of waterworks at any given moment. I think the grieving process was incredibly important in order to connect to my emotions.

One of the best things I did was reach out for support through the HeartKids Networks and speak to other parents going through the same experience. Initially my head felt so foggy that I could barely understand what was being communicated, but between that support network and the cardiology ward we were able to learn everything we needed to know and equally feel that we weren’t alone. The support we were given from family and friends was a comfort, talking about what we were going through was such a crucial step in being able to process our feelings.

Being calm was incredibly tough. At 23 there I found myself with our newborn baby, turning blue through lack of oxygen. What helped to sooth the fear was love. The presence of Wyatt, his cosy cuddles whilst we listened to lullabies. The quiet, tranquil moments when it was just our little family. This experience strengthened our bond as a family, Wyatt made us unbreakable.

In what ways did the operation change Wyatt’s life?

Wyatt’s strength is nothing short of a true heart warrior. He is now 5 years old and never underestimates his ability to do anything. He believes that with his cool zipper scar he will get all of the girlfriends in the world and is proud to show it off. As he begins to play more sports he will struggle to catch his breath, until he is old enough for his next procedure in which they will attach a valve that his heart needs. We have come to realise though, that nothing will stop our boy achieving global domination!

What challenges have you faced since the operation and how have you overcome them?

I think one of the biggest challenges were the trigger and flashbacks. The torment of the smell of hand sanitiser and the haunting beeping sounds from the heart monitor that visited me in my dreams for months after the operation. Even the smell of the hospital for post op visits. My anxiety would raise from 0-100 in a matter of milliseconds and I’d feel goosebumps all over my body. This took a long time to overcome, but I’d always remind myself that this was the place that saved our baby’s life.

What helped me to overcome this was embracing my husband. The challenges that can tear a couple apart can also bring them closer together, and in our case the latter is true. We became an inseparable team.

When the triggers and flashbacks came were there any particular strategies that helped you?

When the triggers and flashbacks came I talked about them with my family and friends. I had noticed previously that the less I said the more closed off I became. Communication was vital in getting out of my head and being present. The more I began to verbalise what I was feeling, the lighter I began to feel.

I also began to do creative things again. I bought a book and watercolour paints and would paint, draw and write. This helped to reignite my spark, sometimes blessings are born in the most curious of ways.

This life experience lead you to become passionate about helping the HeartKids community. Can you tell us more about this?

When Wyatt came out of his operation we were greeted by a lovely lady from HeartKids. She gave us a bag of things to help us at home whilst Wyatt was recovering, and a much needed warm hug!

I remember noticing the huge numbers of HeartKids and babies graduating from Intensive care and moving onto the ward we were on (PICU). It was then that it hit me just how many kids and parents this condition actually affects.

A baby boy moved into the bed next to Wyatt, he had next to him a balloon with 100 on it. Out of curiosity we asked what this meant – he’d spent the first 100 days of his life in and out of PICU. It is then that I was able to comprehend how vitally important organisations like HeartKids is.

In 2015 I ran my first City2Surf to raise money for HeartKids. This would help to support other families and provide funding for vital research for Congenital Heart Disease.

I made the decision to be a stay at home mum and simultaneously raise money for HeartKids through market days, money tins and social media. Glen, my husband, did the Kokoda trail carrying the weight that our son weighed at the time – 16kg. Symbolically this represented carrying our son along one of the hardest journeys on the planet, just like Wyatt’s strength and bravery carried us. We raised just under $8000.

Was there ever a time with all that was happening that you found it hard to get out of bed and do what needed to be done? how did you push through?

I had never really suffered anxiety until I found out about Wyatt’s condition. All of these new feelings and emotions were overwhelming. There were days when I didn’t want to leave the house. Then those days that I wanted to leave the house I was paranoid about germs because of his lack of immunity.

The one thing that I wished that I had done, was accept the offer of counselling at the hospital. I was very stubborn and wanted to fight through it alone, what I now realise, is that It would have helped me to understand my feelings and emotions, to develop coping strategies that I could use in those moments of panic and intense anxiety.

My saving grace were the beautiful people around me. Family and friends who supported us, it’s amazing how much a gesture like bringing us food would help on the tough days. I appreciate each and every loving action that came to us.

In what way did this experience inspire you to launch your new business?

Little Bluebirds Books & Gifts was launched to help to spread joy into everyday people’s lives. We have many customers purchasing gifts for their loved ones in hospital and nursing homes. It was Wyatt who inspired this idea.

We focus on providing books, toys and educational aids. By keeping prices down we hope to ensure that people from all walks of life, with any level of income can enjoy our products.

During the month of February we will be helping to raise money for HeartKids.

Sarah, thank you so much for sharing your family story with us. Wyatt truly is a heart warrior.

Emily-Rose Braithwaite ~ Life Coach

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