We spoke to Alexandrena Parker about her pregnancy journey. Alexandrena lives in Victoria, is a remarkable photographer and dedicated mum to Ruby. She has answered many of the questions we commonly get asked.
Sometimes clinical teams and loved ones hold concern around carrying a baby and its impact on health. Were friends and family supportive of you wanting to become pregnant?
Yes. My family (especially my mum) and my friends’ opinion is very important to me. When I fell pregnant I was in the best health I had been in my adult life – after being on Kalydeco for several years and making lifestyle choices to prioritise my health. Pregnancy had started to come up at clinic appointments and I chatted through the options many times with my CF team. I knew they were supportive and that helped me enormously with making my decision to start a family.
Did you gain weight prior to your pregnancy?
Yes. When I fell pregnant, I was around 55kg and I think I gained 18kg (including the weight of the baby). Now my daughter is almost 4 and I am 61kg and have a very healthy BMI.
I developed gestational diabetes during my pregnancy. I often wonder if the blood glucose test was evident of my already wobbly cf blood sugars! I don’t have CFRD however I have trouble with my insulin levels overshooting after eating and then plummeting to hypo about 40mins after food. I was fully supported by an endocrinologist at Monash hospital throughout my pregnancy, who helped manage my diet and blood sugars. I was very worried about having a large baby due to gestational diabetes.
Do you have to change modulators or CF medications before or during pregnancy?
No. I continued on the same dose of Kalydeco for my entire pregnancy. I did a lot of anecdotal research on others experiences (mainly mothers in the US) and I decided that the risk of harm to the baby was extremely low. My motto was ‘healthy mum, healthy bub’ (given the info I had regarding low/to NIL interaction of drug and baby) so I decided that Kalydeco was one of the major contributing factors keeping my lung function high and overall health optimum.
How was your pregnancy? Did you have any morning sickness? If so, how did you manage your weight?
I had a wonderful pregnancy. I actually think it’s the first time in my life that I’ve felt 100% well. It was strange, as if the hormones made my body work properly or something (Please note this was just my own experience and does not mean this will be the same for others with cf).
I didn’t suffer from any morning sickness. I stopped working at 20 weeks (as a photographer) as my job was often strenuous on my body. I swam laps for 30 mins every day, physio morning and night, inhaled antibiotics my whole pregnancy, MetaNeb™ at the hospital with a physiotherapist 1-2 times per week, focused on rest and ate extremely well. My whole life revolved around looking after myself which my body LOVED me for. It was not a sustainable model for me in my everyday life as I love my work and obviously being a parent restricts you from spending so much time on your health.
Was your energy impacted over the pregnancy at any stage? How did you maintain your health when you were really tired?
Yes. I was very tired. Mainly in the 1st and 3rd trimester. I listened to my body and rested (napped) most days.
Did you work during your pregnancy? What were the challenges if you did?
Yes, but only until I was 20 weeks pregnant. I am an advertising photographer and my job requires strenuous movements and a lot of travel. I found often the work environment I was working in was either hot, very busy, stressful and very trying so I was in a very fortunate position to be able to stop work at 20 weeks to just focus on my health.
Was it hard to keep up your calorie intake?
Not really. I ate a very heath LOW GI diet which kept me stable and able to maintain weight. I avoided all caffeine and most sugar/ processed foods.
Does taking iron and folate impact any other meds you are on? Did you take these supplements? If so, do you need to take a higher dose?
I just took the normal dose – I did take a pregnancy vitamin. My vitamins and baby’s health were perfect so I guess I was absorbing correctly, along with a very balanced diet.
Does physio change when you are pregnant? If so, how?
Yes. I did 2 x physio (pep) every morning and night, swimming laps for 30 mins every day and inhaled antibiotics 2 x per day to keep the bugs at bay. I also did MetaNeb™ at the hospital 1-2 times per week to help clear the lower lobes as I wasn’t coughing as deeply as I normally would.
How did you keep fit during pregnancy, especially in the last trimester when energy levels are lower?
SWIM SWIM SWIM! The best thing I ever did. You are weightless when you swim so it was the perfect way for me to exercise, open my airways and keep fit. I HATE swimming by the way but it sure did keep me well.
Can you breastfeed when on CF modulators? Do any meds come through the breastmilk or is it recommended you use formula? Were there treatment changes?
I continued on Kalydeco. Again, I decided the risk to the baby was very low.
Yes, some medications can come through in breast milk. I had a tune-up 6 weeks post-birth as my lung function declined. I decided I didn’t want my baby to be impacted by IV antibiotics (through breast milk) so I decided to give her formula while I did the IV antibiotics. I expressed milk for the two weeks to keep my milk supply up but when my tune-up was over and I tried to go back to breastfeeding, but my baby DID NOT want to do that one bit. She had decided she much preferred the bottle (as it was easier to feed). I was upset that our breastfeeding journey had come to an end but looking back I think I should have bottle-fed a lot earlier. I struggled with being so tired, and fitting exercise in and breastfeeding which ultimately lead to a tune-up. If I was to have another baby I think I personally would go straight to the bottle to ensure I can look after myself so I can be the best healthiest parent I can be.
Did you find your energy levels increased quickly after the birth of your baby?
NOOOOOOO. More tired than ever, ever before. For me, pregnancy was easy. After the birth was the extreme challenge! I was SO sleep-deprived, so exhausted, in shock and perhaps looking back, maybe a little postnatal depression. My baby was quite a good sleeper yet it was a drastic change…I thought I was prepared for it but I wasn’t.
Has caring for your baby impacted your adherence in any way?
Yes and no. The motivation to stay well is so strong that you now do it more for your child, than yourself. However, finding the time can be challenging … so things can slip from time to time.
Has becoming a mum improved your wellbeing or changed your sense of purpose?
I have always had a great sense of purpose, mainly because of my work. I think much of my identity comes from my work and this is something I struggled with when I gave birth. I felt like I lost a bit of that identity I worked so hard to build. But now my daughter is almost 4 years old I feel so proud of myself that I am both a parent and career woman. I feel a great sense of purpose in being able to balance both (not always balanced perfectly!!)
Where do you go for support if you need extra assistance?
My fiancé, my family, my in-laws, my friends, my CF team, my work colleagues. It takes a village to not only raise a child but to be a CF mum! Never ever be afraid to accept help or ask for help. I always refer to my health as a second child. I have my daughter and my second child (health) to look after equally. In the beginning, I used to try and do it all myself but it was too much. – I have since realised that when I am struggling with my health and the balance of life/work/parenting/health I look in all corners of my life to seek help and to push back and say no.
Do you think your family will grow?
My fiancé and I are undecided. Again, referring to my health as a second child is just that. It’s as much work as a child and that plays a major role in every decision we make. We have such a wonderful, healthy, beautiful, amazing daughter and she really is everything and more that we could have asked for. Sometimes we think perhaps this is how it’s supposed to be. We don’t push our luck and are thankful for everything we have already. A huge thing I do worry about (and it may sound irrational and extremely morbid) that if I was gone (to get unwell and pass away) it would just be the two of them… maybe if there was a sibling 3 would be more of a team?
What advice would you give women with CF who are thinking about having a baby?
I think you really need to think about your health and ask yourself if you really have the physical capacity to look after yourself and a child. If your answer is yes, then I’d say go for it. I know for a fact my health has helped make me a great parent, an aware and present parent because I have perspective, gained through hardship. When you have a child your health does take a hit because naturally, you have to put so much energy into looking after another person – for a really long time!! I think you need to have enough lung function, enough reserve in the tank to be able to take that hit, for the sake of your child and yourself.
What advice would you give new mums?
As mentioned before accepting help, seek help to be a healthy parent. Your child needs you to be healthy (during pregnancy and after birth) so prioritising your health is just as important as looking after your child. You often hear/see mums neglecting their health after birth (this is so normal) but not as a CF mum. This simply isn’t an option as it can be detrimental. I want to be old, see my girl graduate school, turn 21, launch a career, travel overseas, marry or even start a family and this is only going to happen with A LOT of work on your own health. CF is relentless, unforgiving and brutal at times. Sometimes you work so hard to keep on top of it but your health still lets you down. When those situations arise (and you know they will) I want to be able to have an honest conversation with myself and know I did everything in my power to keep healthy.