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Letter to New Parents from Michelle

Congratulations on your new baby!

After some shadowing was apparent on the bowel during the 19 week ultrasound of our second child, my husband and I decided to have an amniocentesis. Forty-eight hours later, it was confirmed that our little girl (also confirmed) was carrying two genes for cystic fibrosis (CF). Thus, began the whirlwind.

I spoke to my obstetrician, he suggested I speak to a paediatrician at Princess Margaret Hospital (PMH) – who was very supportive, helping us understand that it was OK to feel as if we were grieving, for we in fact were going through a grieving process of sorts. She made contact with the respiratory team and we were able to speak to a specialist within days, helping us understand what we could expect with regards to care, medication and the prospects for the future. We left the meeting satisfied that, with support, we were going to be ok. The most important thing that the doctor reminded us was that she was still our girl and that the CF was just part of who she would be.

WOW was he right… Four years on, Zara is about to begin kindy and is a firecracker.

My pregnancy continued without incident and the adventure began the moment she decided to arrive early, with the theatre erupting to calls of “she’s pooed!!” (As there were fears the shadowing on her bowel may have indicated risk of meconium ileus).

What followed were two precious weeks with her without medication or physiotherapy, before our induction days at PMH, and since then she takes it all in her stride and has always lit up the room. I try to normalize her treatments as much as possible, like treating percussion time as cuddle (or skin-on-skin) time when she was tiny.

Yes, I still wake most days fearful of what may lay ahead.

Yes, CF treatment takes time.

Yes, it is frustrating always leaving the house weighed down with antibacterial agents.

Yes, it is hard to stay on top of regimens, especially when she is unwell.

Yes, I get tired of people saying, “but she looks so well” – because she does, even when she isn’t. However, above all else, she is our precious little girl.

Zara has been admitted to PMH twice, after weeks of extra physiotherapy and medication have not been able to shift coughs. She has endured treatments and procedures that would rattle most and come through all of it with a smile and I have found a strength in myself I never knew I had (I now recognize it in other parents of CF kids that I have met).

Zara is already an inspiration to many – including her big brother, and best friend, Evan. He makes sure he reminds us about enzymes and other treatments, and he proudly defends his little sister, making sure anyone with a sniffle keeps their distance. It has not been an easy journey.

My husband and I have endured many stresses and tears, but with the support of PMH and Cystic Fibrosis WA (CFWA) we deal with what we can to the best of our ability every day and look to the future with optimism.

CF can be an isolating condition but we have tried to “live life unaffected by CF”. We go camping and have taken the kids to Broome, Sydney and the Gold Coast and yes, there are precious moments when we forget altogether that Zara has CF.

Cherish your new little one. Try not to think of what could have been (better or worse). CF presents hurdles, most of them surmountable, but nothing compares to the joy your child brings every day. Amongst the treatments, there are plenty of laughs, smiles and wonderful moments to keep you going. Remember, you are never alone.

My thoughts are with you.

Michelle


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