8th amendment referendum part 3 - Mod note and FAQ in post #1

"I am 36 years old & I have cystic fibrosis. I was diagnosed at approx 2 weeks old. My health was gradually deteriorating as expected for most people with cf with age.

In 2013 there was medical breakthrough for people with my genetic mutation G551D & the new wonder drug Kalydeco was born. I had no idea how this would change my life. I went from struggling to walk up the stairs to running 10km. I went from very frequent hospital visits to one third of the hospital visits. In figures I went from 46-50% lung function to 64% lung function. I was no longer deficient in various vitamins/minerals. For the first time in my life I felt "healthy". Fast forward 2 years of taking kalydeco - I felt great & life was good. My partner & I went travelling overseas. While there, I contracted the flu. I was hospitalised in Dublin on my return. You can imagine my utter shock when not only had I gotten the flu but they discovered I was over 2 months pregnant. I was always told by the hospital that I would need IUI or IVF to conceive (if ever) as with a lot of cf girls. I believe the Kalydeco kicked my fertility into action. I seen my unborn as a little miracle. However little did I know that once you are pregnant in Ireland- your life no longer matters & you no longer have control over your own body or life!

From the moment the consultant at St Vincent's hospital found out I was pregnant, all drugs were stopped apart from my enzymes for digesting food including my kalydeco. My bundle of joy soon turned to a bundle of worry & stress. I knew how sick I was about to get. His reasoning was of course the drug was new & they had no idea of the side effects it would have on my unborn as no trials are conducted on pregnant woman. He said he had no data/information to go on so therefore that was it. Full stop. I was terrified. told him he had the data of what my health would be without Kalydeco & how sick I would get. He was knowingly going to put me back to 45-50% lung function (which is considered dangerous for cf people to have kids & is strongly not recommended). That's the moment I realised I no longer mattered. All that came from him from there on in was the importance of my unborns life & how I couldn't have my meds back. He even went so far as faxing my chemist to rescind my prescription for Kalydeco. It was a mixture of emotions. While I one hand I was thrilled I was going to be a mum which I never thought I would be but on the other hand I spent my time petrified I would die & not live to see him/her grow up as many CF girls have ended up needing transplants after having a baby. I believed that if this baby had any chance, he/she needed a healthy mum. I wanted my baby but I also wanted to live. I thought about The consultants point of view & I offered to sign a legal health waiver stating that if my unborn came out with any disabilities or deformities I would not sue him or the hospital. He would not even discuss the option. I was powerless over my own body & health. What kept being reiterated was - All that mattered was my unborn. The possible effects on my unborn.

The only information I had to go on concerning Kalydeco & pregnancy were trials where 5 times the human dose of Kalydeco had been given to pregnant rats & their babies showed no signs of any issues & a blog from a girl in the US who remained on Kalydeco while pregnant & whose baby had no issues. So I made the decision to leave Ireland & go back to Australia with my partner. I attended the Alfred hospital in Melbourne where I was given a choice. I signed a legal health waiver & got my Kalydeco back. They done research on my medications to see which were pregnancy safe to give me & my baby the best chance of survival. I attended the Alfred hospital for my CF & Monash hospital for my pregnancy. They worked very closely together & always knew where each other were at with my treatment. Of course there was a huge possibility that my pregnancy would not go well & the possibility of induction from 26+ weeks was discussed in the event that my lungs started failing. I breezed through the pregnancy & my lung function was 62% at the of the birth.

The care I received was second to none. I remember one of my doctors in the Alfred saying to me, "our job is to care for you, to keep you healthy & keep you alive while also making sure the drugs we give you are safe for your baby without compromising your health. It's Monash hospitals job to care for your pregnancy".

I mattered again. It was strange. I felt like they really had our best interest at heart & not their reputation. When I went back to Australia I had many choices. I had the option for abortion if my health deteriorated. I had the option for induction at any stage past 26 weeks if I was at risk. I had the option to keep my Kalydeco. I had the right to choose. I took a chance staying on Kalydeco & it paid off. I am now married and I have 2 gorgeous healthy boys & my lung function has remained stable all the time. I strongly believe had I stayed in Ireland this would very much not be the case. I often wonder what would have happened If I stayed there for my first pregnancy, when my health started to fail & I had no option for abortion, if I ended up on the transplant list or if I even made it through the labour. At what point (if any) would they think maybe she should have had a choice over her own life. I would rather not get an abortion but I'd rather have the option if I needed one as I would also like to live. I did not like my life being dictated by one man. One man who cares more about his reputation than his patients. I was his patient for 16 years but this meant nothing once I was pregnant. Maybe if abortion was legal he might have seen it differently & maybe even tried to care for both of us. In the end - Everyone's circumstances are different. We should all have the right to choose".