Cure4CF Update
Courtney’s journey to motherhood as a CF woman
Last month, I had the pleasure of speaking with Courtney, an amazing 34-year-old from Brisbane who was diagnosed with CF at 6 months old. Courtney talked to me about her CF and how Trikafta meant she is now a mum of a wonderful 2-year-old boy.
Growing up, Courtney never really considered having a child, as it wasn’t safe, and she recalled always thinking, “Live your short life and live it safely,” being like a mantra to her as she navigated CF management before modulator therapy. During her childhood, Courtney was fortunate to have only one admission to the hospital, but things started to change for her in her 20s. Courtney began to be hospitalised much more frequently, and her lung function started dropping. Her lungs were growing Pseudomonas aeruginosa and Burkholderia Cenocepacia, and in 2018/19, she spent up to two weeks in the hospital during admissions.
As an adult, Courtney has been cared for by the amazing team at The Mater in Brisbane led by Dr Lucy Burr. The team at The Mater was able to gain compassionate access to Trikafta for Courtney in 2019 because of her Cepacia infection, and she has been treated with modulator therapy since that time.
Courtney described a “pinch me” moment as she started to feel like she could take a deep breath, something she had never experienced before. Her lung function became stable at around 57%. In the last 5 years, she has not needed any IV antibiotic therapy, which has been an extraordinary outcome. As her health improved, Courtney faced new challenges; having not prepared for an extended life, she had focused on her career in design and construction. She also faced the decision to consider having a baby, spoke with her CF team, consulted an IVF specialist, and had all the genetic assessments completed. While these were costly, Courtney recalled around $600-700. It was important for Courtney and her husband to have as much information as possible. Her husband was not a carrier of a CF gene. Courtney recalled that she would never have contemplated a pregnancy without Trikafta. The team had many conversations about the possibility of a pregnancy, and Courtney and her husband decided to wait until after Trikafta became available in Australia so that she could be certain of having the treatment throughout her pregnancy. She remembers the day Trikafta was approved, and her team messaged her, “Time to have a baby.”
Courtney experienced morning sickness during the first trimester, and by 20 weeks, this had improved. She had no CF events during her pregnancy, and her lung function even improved to more than 65%. She was diagnosed with gestational diabetes but found she could control this with diet and explained to me that CF gestational diabetes is different from regular gestational diabetes. She was induced at 37 weeks and 3 days, and after a 5-hour labour, her beautiful 3.86kg baby boy was born. Because of the exposure to Trikafta during pregnancy and during breastfeeding, baby Aston needed to wait for a sweat test to be completed after he was no longer breastfeeding to get an accurate result.
Courtney also found that her lung function stayed higher after pregnancy than before pregnancy and has remained stable. One thing Courtney recalled was a worsening of her CF anxiety in the early stages of parenthood. This raises the important need for more research on the best ways to support CF women during and after pregnancy.
Now that Aston is starting daycare, Courtney is navigating the increased risk of infection from early childhood infections. Although she had several infections during the winter this year, she has not required hospitalisation and has been managing with oral antibiotics. Before being prescribed Trikafta, Courtney didn’t tell people much about her CF, but since experiencing the benefits and life-changing impacts of Trikafta, she is now stepping out and talking to people about her experiences. She really enjoys supporting other mums and learning from other mums with CF who are navigating pregnancy.