Our youngest daughter Cece has always been a happy, outdoorsy and cheeky girl. On the weekend before she got sick we were attending the Bathurst Cup and travelled to Sydney for three different birthday celebrations. By Sunday mid-morning she started to deteriorate, she wasn’t eating. By Sunday afternoon she had fast breathing and was not keeping any fluid down. By the time we arrived back home on Sunday night, she was grunting with every breath. As soon as I got home I started to syringe 10ml of coconut water every 10 minutes in the hopes to hydrate her and for her to keep the fluid down. She was still vomiting but keeping some down. I went to bed 3am when she seemed to be sleeping comfortably albeit fast breathing and grunting. I woke up the next morning to much the same except she was so lethargic she couldn’t sit up.
My husband and I debated what to do next, whether to present her to ED or the GP. But then the colour in her skin turned pale. I decided to go to ED. I took my 2 daughters in the hopes I could take them to their singing lessons after I saw the doctor at ED. I thought she was dehydrated and that they would give her some fluid and let us go. But by the time I got to ED her lips had turned blue. What followed was extraordinary. The nurses and doctors at Lithgow ED did a brilliant job of treating her symptoms while trying to figure out what was happening with the help of Westmead CHN on camera and on the phone.
They were downplaying the situation so I would stay calm. They had told me that they were transferring her to Westmead by helicopter as they didn’t have the facilities at this hospital. I thought fair enough, they don’t have a paediatric ward. In hindsight, I had never been in this situation before. I have 6 other children and none have even been admitted into hospital for anything. So I was extremely unaware of the severity of the situation. My body started to kick in when the doctor told me that intubation could kill my daughter, yet not intubating her would certainly kill her.
My husband was 3 hours away with my other children. Trying to organise who to look after them and how to get them to Westmead. Our life changed in the matter of hours. I had been planning on taking my homeschooled kids to their respective activities after a hospital check-up and I wouldn’t see my home for 3 months. We stayed in the parent’s hostel for a week, while family took care of our other children. We missed them but also wanted to protect them from our stress and their sister’s condition of which we had no idea the prognosis nor the outcome.
Then we were given a room at Ronald McDonald House in Westmead. I didn’t realise how much I needed my kids until I saw them, and they definitely needed us. It felt great, it felt right to have us all together. When we introduced them to the House they were so excited and amazed at how well built it was for families with kids. This took so much pressure off us. With the help of the hospital school and the Starlight Foundation our kids were sufficiently distracted from the reality of their sister’s condition. My husband was fortunately able to work from RMH while caring for our kids, and I was able to stay overnight in the ward with Cece.
It wasn’t until a month later that we finally found out what was wrong with Cece, with certain. Left Ventricular Non-Compaction cardiomyopathy with Dilated Cardiomyopathy phenotype and severe Left ventricular systolic dysfunction in the context of Enterovirus Myocarditis. Cece had contracted enterovirus (hand, foot and mouth disease) which caused myocarditis (inflammation of the heart) which caused dilated cardiomyopathy a relatively rare heart disease that is incurable. She was in acute heart failure, and she was facing the possibility of being listed for a heart transplant if she was not able to stabilise on oral medications. All this is from a common kid virus. She was in PICU twice and in the Edgar Stephen Ward to stabilise her symptoms and get her off IV medications and on the correct set of oral medications. We waited with bated breath to be told she was stable on medication and did not require a heart transplant (for now). It was the outcome we hoped for and it came 2 months later. She is now stable with chronic heart failure. She is on 9 different medications and some supplements for immune support and we were discharged to Ronald McDonald House. This was another challenging time. We had to learn how to administer medication, put in her NG tube, feed her with a pump and asses any symptoms all by ourselves. Allowing us some time at Ronald McDonald House was a Godsend. It was all over the place with medications, caring for the other children and trying to fit in housework, school drop off and pick up and laundry. Fortunately enough for us, the House accommodated meals, haircuts, and lots of activities for the kids. We were also able to attend outpatient appointments and be close to world-class care for another month before we officially headed off for home. Now we are finalising our time here at the House, we are confident that we can go home and take care of our chronically ill child and her siblings.
We are so incredibly grateful for Ronald McDonald House. For every meal, snack and activity that you’ve planned to help keep our head above water. For the ability to have visitors. The ability to get my hair done. The ability to have a safe space for my family while we have been so far from home. You kept us together and you helped our daughter recover. Thank you and God bless the staff and especially the volunteers.
What is your favourite thing about the House? Keeping us together
What would you say to our supporters: You’ve helped make us whole while we were being broken to bits.