How We Managed Diagnosis Stress

Tracey and Fiona have a beautiful daughter Evie, born via IVF in 2018. Tracey shares some of their experiences about the shock diagnosis, and how they manage their stress and anxiety around managing their daughter’s CF.

Our daughter Evie was diagnosed at birth through the Guthrie test.

We are a family of two mums, and our daughter Evie was conceived via IVF through a fertility clinic. We didn’t know that I was a carrier of CF, so it was a big surprise when Evie was diagnosed.

We felt like our world was crumbling when we got the phone call from PCH. You just want a healthy baby. Then you have this baby, and you think, what sort of life is she going to have now with CF? Is she going to have a long life? Will she be in pain? How are we going to take care of her with no family in Australia?

It was such a shock; everything just fell apart in our little ‘new mums and family’ bliss bubble. We went each day to the hospital for a few weeks for education and went into auto mode, because we had to.

For myself, I like to know as much as possible. I need all the information, good or bad, and work better with a wider picture, whereas Evie’s Mumma Fiona (my partner) works with the now and then. I asked questions about her future. What sorts of drugs will she need to take? What her life will be? etc, trying to get an understanding of what the future looks like. This helped me to think it was going to be OK, she was going to be OK.

Once we had her meds under control, it felt like it would be fine and that we would be alright, and as a family our slogan became ‘We can do this and we’re doing a good job’. Fiona is very logical; she was asking questions of the doctors about bronchoscopies and what we need to know and do now, not further down the line, because we have different ways of processing things, we also remember different things.

The uncertainty at first was difficult as we had never heard of CF nor did anyone else that we knew. The nurses were amazing from hospital. They said not to Google which we didn’t and that’s advice I’d give to any new parent or family of a CFer; don’t Google!

Another surprise, I ended up with post-natal depression which made everything that little bit harder for us. We tried to keep things pretty standard, treating Evie like any other child, just taking a few more precautions. When people came over, they were told to sanitise when they walked in the door and this became a habit that still stands in our house; sanitise then cuddle.

As a couple, we love to go scuba diving, it’s our way of managing stress and anxiety. Trying to be an average family just like the rest, going out and about to coffee shops, wineries, camping, kayaking and doing these things together as a family, rather than treating her like a glass ball. We didn’t shy away from anything and in our opinion that helped us manage the stress, seeing her do all this with us.

When I say ‘average’, I say this because we don’t use the word ‘normal’ in our family when referring to Evie, because in the end we don’t want her growing up hearing that she is not normal, she’s perfect and that’s with or without CF. Her life is different and will be different but that doesn’t mean she isn’t normal, it means she’s just got a bit more going on than the ‘average’ child.

We developed some new strategies around managing anxiety. I started acupuncture to relieve tension in my neck. Fiona started breathing exercises which we started to do before going to hospital appointments or at other times when we’re stressed. Podcasts and stories on or from people with CF were helpful, knowing they are living perfectly average lives helped us to know Evie would too. Breathing exercises and scuba diving really help us. We still go diving in winter as the visibility is great and we love to catch crayfish when diving. We can’t talk under water either which is nice, we just focus on our breathing and take it all in and come home to Evie a lot more relaxed and grounded. We feel that water is a powerful source of calmness and we love the beach as a family.

Some of our friends know Evie’s medication well, so they look after her when we go diving. Our family also came over from the UK and South Africa and helped us at diagnosis. We live near the ocean and the sea water is so good for her, she loves it. Doing the things that you love is so important, both together and separately. We would come home to Evie in a better state, in a calmer place. We have really good communication with each other and Evie and CF has brought us closer together.

Evie started day-care at 7 months old. We wanted her to have the life that all her friends have. To manage the anxiety about this, for two weeks we went to the day care and took all of her food and medications and I created a book on how to care for her with lots of pictures of the process of giving her meds. They would send me the menu each Monday and I could calculate what enzymes she would need based on that. She got used to other people giving her medicine. It was a bit unnerving for us but she was perfectly fine. Maggie from CFWA also came to do a talk at the day care at the start and then again when she started in the toddler room. The day care really liked that and also got a better understanding of this almost unknown thing called CF.

Every hospital appointment is still stressful, even the general appointments. The hospital is great, but every appointment or phone call is just the reminder that she’s got this thing called CF.

We do a lot of self-care before going to the hospital. We make sure she is all fed and happy, Fiona and I do our breathing, put some music on and have fun on the way there. We will make it a special day, go to Kings Park on a picnic, where she can do something special afterwards. We don’t go on our own, we go as a family, visit a friend or do breakfast or lunch around the appointments. When she’s older she can tell us what she wants to do after them.

We have good friends here, lots of Evie’s aunties and uncles. A support network of people that we can phone if needed. Some of them know her medicine and physio, but they don’t really understand the emotional side, however if needed, they would be here to look after her or us in a second.

Words of advice to all new parents is that it gets easier; every child is different. You should call on the people who are close to you. Be vulnerable, be sad and don’t be shy to ask for help but also remember and be happy, you have this little child of yours and they are still perfect. Take time together doing fun things. You can’t be too proud. Reach out to CFWA, there is always someone there to talk to and are amazing help we’ve found, and they also connect you to other parents which really helps. They just know what you’re going through. It will all be OK, there are no silly questions.

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