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Episode 379

Jessica’s Pregnancy with Cystic Fibrosis

In this episode, Jessica shares her experience with cystic fibrosis (CF), an inherited disorder that causes severe damage to the lungs and digestive system. At 21 she was told she would need a double-lung transplant but a few years ago she was accepted onto a clinical trial that changed her life. The therapy was eventually available on the pharmaceutical benefits scheme (PBS) and after many conversations with her husband, she decided she wanted to try for a baby. Inspired by the many mothers in the CF community, she armed herself with support in pregnancy and had a private obstetrician and a private midwife alongside her CF healthcare team. Jessica’s story is a brave and beautiful one and she reiterates the importance of informed choice every step of the way.

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“For much of my adult life, having a baby was definitely not guaranteed and there have been times when even walking up the street was too hard.

“At 21 I was told that my health had declined to a point where I needed a double-lung transplant. That was a catastrophic moment for me; my life just fell to pieces. But, when I picked myself up, my then boyfriend (now husband) and I had a deep understanding that a transplant wasn’t the right path, the right journey. We moved interstate to have better access to health care and we quit our jobs and university and my health became our full time job. At that time we were buying more time before a transplant so we weren’t thinking of a future beyond the immediate months and years. I was spending up to six months of the year in hospital and when we got married in 2013 it was beautiful but my healthcare was declining to a point when the transplant conversation was coming up again and I remember thinking: I can’t look forward to what comes next.

“In a sliding doors moment, a couple of months after our wedding I was accepted onto a clinical trial. That drug was a complete game changer; it meant I was more independent, I wasn’t spending as much time in hospital and I was starting to dream a bit bigger. I didn’t think of motherhood and for a while there I was okay with my quality of life…but that was me trying to reckon with something that was quite difficult. In 2018, regardless of the medication, my lungs were so damaged that it didn’t take much for me to decline and life got harder and my fear creeped in. There was a flicker of hope because there was another new therapy in the pipeline…by then genetic modulators were game changers so my team applied for compassionate access which is given to patients immediately, before a medicine is available on the PBS. I was knocked back from that initially and I was gutted. I was rejected again and then declined again. Three years ago I was hospitalised and my team could see how hard life was becoming so they applied again and I got compassionate access at the end of March 2020. Within days I was feeling on top of the world; I was dancing around my apartment; I could dance and sing and breathe and not be out of breath. I knew it was going to be so positive for me.

“It was when I hosted a panel for International Women’s Day in 2021 when things changed; I was speaking to women who live with chronic illness and they were all mums. I was so taken by how they juggled motherhood and living with their conditions and on that day I dared to hope again. That’s why I’m so passionate about sharing my story because, as the saying goes: if you can’t see it, you can’t be it. My husband and I started having nervous conversations and I was aware that while I was on compassionate access I couldn’t fall pregnant; that meant I needed to wait for a PBS listing. I knew I could carry a baby but I knew caring for a baby was going to be different. Often for CF women getting pregnant would be challenging but also, this therapy improved fertility for those women with CF. I was very fortunate that I fell pregnant just before it got on the PBS.

“Patient communities are so strong and it’s so helpful for pregnant women like me; I was even taking some information from the support groups to my health care providers. I also work in the health advocacy space and there were a lot of things I was hoping to avoid so continuity of care was really important to me. My GP was able to talk me through my options for high risk obstetricians and I felt like I hit the jackpot because my OB was so supportive and encouraging and I felt so held in my appointments. I also chose to have a private midwife in my model of care and I realise that it’s a privilege but I was just so supported throughout my whole pregnancy.

“Other than a few little blips in my pregnancy, I felt amazing and there was a stage where I felt probably the best I’d felt in my whole adult life. I have CF related diabetes so I had an endocrinologist and maternal foetal medicine specialist monitoring me and she had very high standards but even with that I felt fantastic. I have a lot of arthritis pain and I certainly had a reduction in pain during pregnancy, probably due to the relaxin in my system.

“It was my midwife who, in those moments when I felt really confused with conflicting information, she helped me navigate all of that. She acknowledged that she’s not a CF specialist, but she guided me through my options and considered the information and communicated with my health care professionals. She really was an angel. I had more scans than normal and that was reassuring for everyone involved. I didn’t feel that in a fearful way.

“Anybody can carry a genetic condition – many people carry it but don’t know about it. My husband was tested before we conceived and he wasn’t a carrier so it meant that our baby wouldn’t inherit the CF gene. If he had been a carrier, we would have had to go down the IVF path.

“When it came to the birth, there were a lot of conflicting opinions. Someone said to me that it wasn’t just about two beating hearts, that we could safely plan for an empowering experience. I didn’t feel like an induction was necessary, even though because of my diabetes it was suggested. By 37 weeks I felt great so we agreed to reassess at 38 weeks and then we pushed it out to 39 weeks but then my waters broke before I got to that appointment.

“I stayed at home for a little while. I didn’t feel like I was having contractions so we stayed home overnight. I had a bit of back pain in the middle of the night so I got a heat pack and went back to sleep. My midwife called in the morning and she was keen for me to go to hospital to get checked and she confirmed that my waters had broken. She went through my risk and options and because I hadn’t had much progress, we opted for an induction and IV antibiotics.

“I was a bit concerned about breathlessness in labour but CF bodies are incredibly resilient and we’ve learned to live with our normal. It was really reassuring to speak to other CF women about this. I also had my husband, midwife and OB with me and they knew what my normal was. I was a lot calmer in the lead up to labour than I thought I’d be.

“Contractions started to ramp up in an hour or two and I really appreciated my TENS machine. I laboured till 4:30pm and I was starting to get tired at that point. I got to 10cm but we hadn’t seen a lot of progress in bubs position; we just couldn’t get her to move down. We had about an hour of active pushing and then we made the call to have an emergency caesarean. I was comfortable with having a caesarean even though I was prepared for labour. It all happened quickly but I felt like it was my choice and I felt empowered in that decision making process. I feel really lucky that I got to experience the labour and I made choices that allowed me to have a healthy baby and it definitely wasn’t the traumatic experience that people assume.

“Pain management was a top priority for me and in theatre I knew my midwife was there advocating for me so I didn’t feel like I needed to stress about that. Time started to warp and I got nauseous and started shaking from the drugs. Hubby was the first one to hold her and I had a bit of blood loss and in my birth plan I outlined that he would have skin to skin with her if I wasn’t well enough.

“I was in recovery for longer than I guess is normal. She was placed straight on my breast in recovery even though I needed help holding her. I chose to stay in hospital for seven days and that was to make sure I had appropriate pain management on board to make sure my lungs were ok. I have to cough and do respiratory physio to stay well and avoid a chest infection, managing that with caesarean recovery was going to be hard so I stayed a few extra days for that support.”

If you’re interested in hearing another pregnancy and birth experience with a mother who has CF make sure you check out Alex Parker in Episode 186

Topics Discussed

CF, CF-related diabetes, chronic illness, Emergency caesarean, Induction, One baby, Private midwife, Private obstetrician, Spontaneous labour

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