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Kirsty: The Challenge of Pregnancy with CF

Working at Cystic Fibrosis WA (CFWA) means that we frequently meet people in the cystic fibrosis (CF) community who are truly amazing and inspiring as they deal with the challenges that living with CF can bring. Kirsty Ballantyne, a 35 year old who has CF, is certainly an example of an inspiring and lovely person, who kindly shared her pregnancy experiences with RED and the challenges she has faced being a mother to two little girls.

Can you tell us about yourself, your family and your experiences of pregnancy?

I was diagnosed with CF two weeks after birth and my sister who also has CF was diagnosed at 18 months. My husband Peter and I are both from New Zealand and we met through my best friend’s brother, who was Peter’s best friend. We came over to Western Australia seven years ago for work, before we had any children.

I was told from a young age that it would be unlikely that I would be able to have children due to having CF, even with IVF.  For some reason I didn’t agree with the doctors, I thought “That’s not me, I’m going to have a child, and I’m meant to be a parent.” I think being raised by a really positive mum has influenced me to be a positive person too.

Peter and I decided to try and start a family while we were working in Karratha but we had a Plan B if I was unsuccessful in getting pregnant which was to travel lots and see the world.  We had been trying for about three years to get pregnant and I was just about to book a holiday to Rome as we thought we would need to put our Plan B into action. We were also organising our wedding; I had chosen a dress, and we had even bought ourselves a dog. But then I had to call my family and say that Peter and I weren’t going to be getting married and at first my family were shocked and thought we were breaking up. Luckily, I had great news to tell them – I was pregnant! I didn’t believe it at first, so I did four tests and then had a blood test with the doctor.  It took ages for the test to come back, but it confirmed that yes, at the age of 30, I was pregnant.

While I was pregnant I was working about 50 hours a week – still up in Karratha. I had to take lots of salt and electrolytes while I was there. By 30 weeks of pregnancy I finished working as I wanted to focus on my health.  I did three nebs a day to keep myself well and in preparation for the labour I did lots of yoga and swimming. I had trouble gaining weight during my pregnancy. Paul, the dietician from Charlies, had lots of advice on how to add calories and although I did try my best, I could only gain seven kilos.  I had to go to King Edward to see an obstetrician as my pregnancy was classed as high risk. I found my obstetrician Janet to be great and very vigilant. She liaised with the CF clinic at Charlies.  I did have double the appointments though, as I had to go to both King Edward and Charlies. I had ultrasounds every four weeks and clinic at Charlies every four weeks too.

I did get gestational diabetes and so had to watch my sugar intake and I ate lots of red meat – I doubled up on chops.  My lung function went down to the 60’s towards the end of my pregnancy, but it went right back up after the birth. I had my baby, Chelsea at 38 weeks and she was 6 pounds 11.  I was in labour for about seven hours. They monitored my oxygen saturation during the birth and I didn’t need extra oxygen. I also had an epidural. I spent two nights in the hospital with Chelsea before I could come home.

I breast fed Chelsea for three months, but I was losing too much weight, despite the fact that I had lots of snacks stashed everywhere around the house to eat while I was breast feeding. Chelsea was a good feeder so it was a shame, but I had to focus on not losing too much weight. I had the support of Fran, a home care worker from CFWA, who came to look after Chelsea so I could go and exercise.

Chelsea is now four years old, attending kindy and doing very well. So a couple of years after I had Chelsea, I spoke to the CF team about trying again for another child. They thought my health was good and my lung function was over 60%.  We were trying casually to get pregnant and it took about a year.  With my second pregnancy I needed a three to four day admission at Charlies for intravenous antibiotics. I had gestational diabetes again but my lung function was good towards the end of this pregnancy.

Chelsea came to my appointments and I would pack a bag of supplies to keep her occupied, she is used to coming to appointments with me, so she was good.  I was in labour for 3 days with Ariah and had an epidural for this birth too.  I spent one night in the hospital before I could come home with my baby girl, who was born at 37 weeks and weighed 7 pounds 14. After two births, my pelvic floor is also not too bad!! I breast fed Ariah for two months but again I was losing too much weight so I had to give her formula.

While I was pregnant with Ariah I made lots of food that I froze, so I didn’t have to do too much cooking once I came home. During my second pregnancy I also had private yoga lessons as well as going to group sessions. I found the private ones were really helpful in teaching me to breathe in and out and I also had a routine I did at home.  I saw the yoga lady once a week, and it was a bit expensive but it really helped with my lung function and also with my pregnancy.

I found the first few months after I had Ariah very hard. I was so tired but luckily I had my mum there for the first couple of weeks, cooking all sorts of amazing food, without which I would have wasted away. But after she left I found it very difficult. We had some other stressful things going on too so my health failed a bit and I just couldn’t find the time to exercise. We had to head back to New Zealand when Ariah was six months to help our family out. My lung function dropped and I haven’t been able to get it back this time.

Now though, I have got myself back into a good exercise and physio routine. We have worked hard to get both the girls into a good sleep routine too. We followed a book called “The Baby Whisperer” very closely and I dug my heels in about the girls sleeping well. They sleep from 7 p.m. to 7 a.m. and Ariah has a 1-2 hour nap each day.

I never miss a day of doing my nebs, except if we are flying to New Zealand and it’s too difficult.  In order to do my exercise I will put on a movie for Chelsea and go on the exercise bike while Ariah is having a nap.  I have found that walking on soft sand at the beach is a really good form of exercise too.

I set my alarm each day for 6 am and do my airway clearance for 30 minutes.  At night I do a saline neb, once the girls are in bed. I look forward to this as I have made it my time. I watch something I enjoy on Netflix and can zone out for 45 minutes, as I have to lie down while I am doing the treatment. I know that if I look after myself then I am looking after my children.  Pete is a hands-on, amazing dad so that also helps a lot and he reminds me to do my treatment too. He is a fabulous husband to have, I don’t know what I would do without him.

I am now finding having two children is easier than I thought it would be but the hardest thing is when I have to go to hospital.  I recently had to go for an admission and Pete brought the girls in each day, but I found it very hard not being with them.

We are moving back to New Zealand soon to a house with lots of land as Ariah loves running around outside.  We will have great family support, and I will be closer to my sister who also has a three year old child. We are really looking forward to moving back home.

We will miss Kirsty and her family but we wish them all the best as they settle back into life in New Zealand.

 

Article from RED Magazine, Edition 2 2016.


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