Ex Newcastle Knights cheerleader Savannah Mckell defies cystic fibrosis
Former Newcastle Knights cheerleader Savannah Mckell wasn’t expected to live past her teens – now she’s a mum, with another baby on the way. In the lead-up to Mother’s Day, read her remarkable story in her own words.
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Savannah Mckell was diagnosed with cystic fibrosis at just two weeks old, when her parents were given a grim diagnosis and life expectancy.
She wasn’t meant to make it past her teenage years and was coughing up blood in the hospital just hours before her engagement party – and thought she could only ever dream of becoming a mother herself.
Today, the 29-year-old former Newcastle Knights cheerleader is 15 weeks’ pregnant with her second child, and gearing up to spend Mother’s Day spoiled by husband Tom and two-year-old son Elijah.
After having Elijah, the Lake Macquarie woman contracted one of the deadliest bacterias for a patient with CF and, holding a newborn in her arms, was worried that after all she went through to be a mum, she wouldn’t be around to watch him grow up.
A new medication changed everything.
Here is her story.
I was diagnosed with cystic fibrosis at two-weeks-old.
My parents, although given a grim diagnosis of my life expectancy, never let it stop them raising me like a normal kid. I never saw myself as different – I just knew I had this “condition” and it meant I had to do more stuff to stay healthy.
It wasn’t until I was older that I read an article and released that this “condition” was actually something that could very well be terminal and eventually kill me.
I think my parents not being 100 per cent open about my disease and life expectancy as a kid allowed me to try things other CF parents may have steered them away from – like running, swimming, tumbling – due to fear of their lungs not keeping up.
I was constantly active and think it played a huge role in keeping my lungs clear and healthy while I was a child.
Being a huge NRL fan, I always wanted to be involved in the game but couldn’t in a traditional way. Cheerleading was an escape from my day-to-day life living with CF.
It was like stepping into an alter ego on days when I sometimes was just struggling to breath. To dance in a stadium of 30,000 people every weekend was the ultimate feel-good experience.
Training was hard and I quickly realised it wasn’t just pretty costumes and big hair, with late night training sometimes finishing at 2am and a room full of very competitive other dancers.
With high kicks, jump splits and fast choreograph I often struggled to keep up.
I would do puffers in the toilets and cough up my lungs but kept this hidden … I wanted to prove to myself that I could do this without anyone’s help and I went on to do that for three years.
From as young as I can remember, being a mother was always my dream. Deep down I knew it would be a complicated journey to reach motherhood as many women with CF were unable to fall pregnant, but I knew I would try every single avenue to make it happen.
After my husband and I didn’t fall naturally for 18 months I knew I wanted to get on top of fertility help as soon as possible. We went through two full rounds of IVF – the first one being unsuccessful but my doctor assured me he was very positive the next round would work.
Financially we only had enough money to do one more round, mentally I knew I couldn’t do another IVF if this failed and would look into potential surrogacy or adoption. Luckily for us our embryo stuck and I was pregnant!
We couldn’t believe it! Pregnancy was extremely hard physically on my body. I was sick three to four times a day every day from five weeks to 38 weeks. I lost any weight I had on me, was hospitalised often and had to have PICC (peripherally inserted central catheter) lines with antibiotics running through me 24/7.
After spending so much money on IVF and being so scared of losing the baby, I felt permanently attached to the lounge, too scared to even take a step in case I lost the baby we had worked so hard for. I was able to successfully deliver our son at 38 weeks with a happy, healthy baby boy in December 2022.
The relief of having him in my arms and no longer trying to survive in my sick, struggling body was the happiest day of our lives!
I absolutely thrived in my first few weeks of motherhood, as my body was relieved to no longer be pregnant. I was so proud of myself for getting through the hardest thing one with CF could, when one morning I spat into a tissue and noticed blood – something that I wasn’t too unfamiliar with, but this time something just wasn’t right.
The following week I got a devastating phone call from my CF clinic – that I had somehow picked up one of the deadliest bacterias for a patient with CF.
This was the biggest shock of my life – after 26 years, how could this be happening right now after just giving birth? I quickly ran to Google (the biggest no) and read the words 12-24 months mortality once diagnosed.
Holding my newborn and reading that was one of the most gut wrenching moments of my life. So you’re telling me I might not see my son reach two?
My clinic immediately took action and pushed to put me on a brand new medication the PBS had just approved. It had come out while I was pregnant but I denied starting as it was so new I was worried it could harm my pregnancy.
The cost of Trikafta – without subsidy – can exceed $250,000 a year. As it’s now on the PBS, I pay $31.60 per month.
I had heard my whole life “there’s a cure for CF coming one day” – but I never truly believed that. Medical trials came and went and new buzzwords such as gene therapy popped up every now and then, but they never really did much.
I was very pessimistic about Trikafta but from the first pill I took, I breathed a deep breath for the first time in my 26 years. It was a complete game changer. After three months of intense antibiotic and nebulised treatment in combination with the new drug my results showed no more signs of the “death sentence” bacteria and I was able to get back to normal life and not have this dark cloud over me any more.
Without Trikafta we were 100 per cent set on “one and done” babies. but since its introduction and how life-changing it has been for my health, we toyed with the idea of going through another round of IVF as we have one embryo left on ice.
While my days right now are completely immersed in raising my babies, spending time with my husband and staying on top of my fitness and health, it’s freeing to be able to look into getting a better career and not thinking, “Oh will I even be alive once I finish studying?”
For any other women with cystic fibrosis or those struggling to become a mother just know if it’s something you truly want, it will happen!
It might not look exactly like you envisioned and it might be really, really hard right now or during your journey, but it can and it will happen. One way or another. ■
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Originally published as Ex Newcastle Knights cheerleader Savannah Mckell defies cystic fibrosis
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