"You're your best advocate"—Shelley on pregnancy and CF

“You’re your best advocate”—Shelley on pregnancy and CF

When Shelley and her partner decided to start a family, they had plenty of questions but there weren’t always a lot of answers. For CFStrong, Shelley discusses her experience of pregnancy, childbirth and parenting and how she managed her CF throughout.

On the decision to have a baby

When we first started talking about pregnancy, which was quite a while ago, we did know we wanted to have a child and I was in a relatively healthy state. My lung functions never looked great on paper, but it didn’t actually reflect what I was like. So, on paper, my numbers have always been around the mid 50s for my lung function. But I was really healthy, I had a full-time job, I could be at home and very, very rarely need to go into the hospital. So, I was yeah, really, going really well beforehand. And that’s partly why we felt ready to have a baby and try for baby because our life was so stable, and my health was so stable.

Prenatal | Early reactions

There was a lot of hesitations, I think, from the hospital, and probably more quiet hesitations from my family. I know my mum was, she’s always, you know, obviously, she’s my mum so she’s always worried about me. And even when we told her when I was pregnant, she was like, oh, oh, um. Yeah, excited, but just worried. Because on paper, it doesn’t sound great. But I had a lot of history of showing how good I could be. So, I kind of had to be my own advocate and say, I know in myself that I wouldn’t try and do this if I didn’t think I could manage.

So, I moved to the adult hospital and told them straightaway, and they were supportive, and it was looked at as okay, if this is what you want to do, then what do we need to do to get you there, and we’ll get you there. There wasn’t a huge amount to change. But we just kind of went through all of my aspects of my physio and my nutrition and my gastro and looked at everything and kind of got me as ready as I could be. So, when the time came, I was as healthy as I could have been.

Image is of two adults (one woman and one man) and a baby boy standing in front of a grey and white cubby house with a purple door. The woman holds the baby boy. All three are looking towards the camera and smiling.

Prenatal | Research

So, before I got pregnant, we had a lot of concerns, obviously. And we tried to do as much research as we could, but there’s just not a huge amount of information out there. Or that we could find at least about CF women and having babies and things like that. So, it was a little bit tricky. It was either we heard stories of people who were in very different, worse circumstances, or people who were in very different, better circumstances with their lungs. But it was really tricky to find any information that would be more relevant to me, which is why I kind of felt we were a bit, a little bit jumping off the deep end. And we really struggled to find information that was relevant to us.

We were anxious, him probably more so than I was. The unknown was a bit scary. But I just had to base it off look, we know what I can do. We know I work full time. I lead a very fulfilling life. CF very rarely holds me back. So that’s all we’ve really got to go on. And we know I can manage that. So, we’ll see how we go.

Prenatal | Antibiotics

Before I got pregnant, I had been long term on antibiotics for years and years and years, just to keep me at baseline. When I spoke to my doctor about that we had begun trying, we said, well, let’s try taking you off the antis and see if you can manage without them. And I lasted about a month, and then came back to them and said, no, I can’t, I can’t do this, I need to go back on them. So, we just moved me on to one that we knew was safe for pregnancy. And then I continued to take them throughout the whole pregnancy.

Prenatal | Energy levels and physio

So, during my pregnancy, I was really well, for the most part. I only had a couple of times where I got kind of nauseous. But more than anything, I was just really tired. During my first trimester before we could tell anybody, I was still working, and it was our busiest time at work. And my mentality was just kind of you’ve got to do it. You’re at work. Nobody knows so I can’t use it as an excuse. So luckily, I was able to get through it well enough, even though I was exhausted the whole time.

And then almost immediately after telling my work and announcing that we were pregnant, COVID hit, and we went into lockdown. So fortunately, I didn’t have to go to work and do too much while I was pregnant. That probably helped me a lot through my pregnancy. Being at home and being able to do really good physios every day and not have to be out in the winter cold. And for me, luckily physio didn’t have to change while I was pregnant. I do a Pari Pep neb with hypertonic saline, and I was still able to do everything while I was pregnant.

Luckily, he was, I carried him very low. And also, I think I have quite a long torso. So, he didn’t actually come into my lung capacity space, which I know is a common problem for a lot of women, not just women with CF. So, I was really fortunate that that wasn’t an issue, and I was still able to do physio. It was a little bit awkward sometimes trying to do physio with a big belly in the way. Nothing’s super comfortable when you’re very heavily pregnant, but it was totally fine.

Prenatal | Maintaining weight

So, prior to getting pregnant, I was at a really stable weight luckily. I didn’t have to try and gain weight beforehand. I got my peg put in when I was 14, when I was very underweight. And luckily, I managed to put on weight and get really healthy until the point where I still had my peg in, but I wasn’t having feeds for about two years prior to getting pregnant. So, I was really stable and consistent, which was good. Then when I got pregnant, I just didn’t gain as fast as I would have liked initially. So, I started having milo and Sustagen milk shakes like I did when I was a kid. And that helped me get back up again. And then for the second half of my pregnancy, I was able to manage it.

Prenatal | CF-related diabetes

So, prior to getting pregnant, I was diagnosed with CF related diabetes. And I was on insulin for a couple of years. But the amount of insulin I was on, and my actual diabetes was so minute that we retested me, and I went back into a normal baseline. So, I was technically diabetic for about three years. And then they reclassified it back into just impaired glucose and monitoring it basically.

When I became pregnant, there was a high thought that I would then get gestational diabetes. So, when I was about 17 weeks pregnant, I reached out, I got in contact with the endocrinologist. We started by just tracking my blood sugars. And she noticed them increasing to the point where we then decided that it wasn’t worth me doing another glucose tolerance test, because I had had a previous positive diabetes test. So, we just took it from there to manage my insulin doses with what I was eating so as not to restrict me too much while being pregnant. She still wanted me to be healthy and not eat too much junk food. But it was more managed with the insulin than with a diet.

Image is of a woman wearing glasses and with long brown hair holding a baby boy. They are both looking towrads the camera and smiling.

Prenatal | Final stages

I was seeing a high risk obstetrician, and every week when I would go in, there would be no real news to say just keep doing what you’re doing. Everything tracked great the whole time. My lung function seemed to be pretty stable. And it wasn’t until probably about 35 weeks that I was exhausted and done and ready for him to come out. I had really, really bad blocked sinuses, which apparently is a thing that nobody tells you about until I started talking to other women. And they all went oh yeah, I had that too. Which meant that I couldn’t sleep. And I wasn’t sleeping for more than about an hour at a time for weeks.

And so that was kind of the culmination of why we decided to induce at 37 weeks, because I didn’t want to be so so tired and rundown that by the time he was born, I would then collapse and not be able to take care of him. But yeah, that really surprised me and kind of took me down at the end.

Natal | The delivery room

So, I was induced at 37 weeks. We had previously discussed that because I was a high risk pregnancy because I had CF, the plan was to kind of manage the labor in a really calm way so as not to put any extra stress on my body. It’s very tiring having a baby, being in labor, contractions, pushing, it’s exhausting on anyone. So, trying to do that with CF, they were concerned that after he was born, that there would be like a huge hit of adrenaline and then it would drop and there was possibly complications with that.

So, it was highly recommended that I get an epidural. Just to keep my body as calm as it could be. So yeah, we were, I was induced, but the induction medication was put through my portacath, which meant it worked a lot faster than the midwives were expecting. So, things got a little bit hectic and a little bit crazy really quickly. So, the epidural didn’t quite get to me as fast as it would have been good for, but it got there in the end. And yeah, I, when I was ready to push, I pushed for an hour, which is really tiring and really hard work. And he didn’t, his head didn’t come down at all. The only way I could describe it was like pushing a brick wall. And you can feel yourself pushing, but there’s no give on the other side, pushing with an epidural.

We had discussed, hopefully to stay with a vaginal delivery just because a caesar is so much aftercare to worry about afterwards with a baby and with CF. So, it was a last resort. After pushing for an hour with nothing happening, everyone kind of went, that’s probably where we’re going to need to be. And the decision was made to take me down to theatre, we signed the consent forms, everything was ready to go. My epidural was pushed up to be ready for a caesar. And then at the last minute, he was ready to go, and I was able to push him out. So, it was a little bit rushed, a little bit crazy. But luckily, I didn’t have to have a caesar.

So, by the time we got back from delivery up to our room, being a CF and knowing what it’s like, all I wanted to do was be able to sit upright, because the longer I stayed on my back, the worse it was going to be for my lungs to stay like that. So, trying to then sit up when you’re still as numb as anything was a little bit difficult. But yeah, I was, I was pretty okay, after a couple of hours. So, he was born at six o’clock that day. So next morning, same as everything, I got up and did physio and just went on with it.

Postnatal | Breastfeeding

Before I got pregnant, I always wanted to breastfeed. But then, when I got pregnant, I kind of took all expectations off myself of saying I’d like to, but if it’s not feasible, and it’s not what’s best for me and him, then I’m not going to put any pressure on myself.

Fortunately, I’m very lucky and breastfeeding just came pretty easy. And I didn’t really have any problems. And I’ve been managing to still breastfeed and he’s now 10 months old. So, because of that, we decided to hold off on doing any modulators, like Symdeko at the moment. If my health was in a different position, then yeah probably I would have started them sooner. But there is very small amounts of information I think about breastfeeding and modulators. But we just felt because I am so stable and because I was comfortably stable beforehand as well that we’d just hold off until I’m finished breastfeeding for now.

Postnatal | Recovery and physio

So, with my delivery, I ended up having an episiotomy and needing stitches. So that was a bit tricky to manage in the after care of managing stitches with coughing and physio. But I just took it as slowly as I could. And just focused on trying to clear as much sputum as I could, without hurting myself too much.

It’s tiring, obviously, having a newborn baby and even more tiring having CF with a newborn baby, but my lung function stayed pretty well. And I was really fortunate that my husband Jared was home for those first few weeks. So, I could prioritise still getting physio done with a newborn, so that my health didn’t, didn’t drop. There’s no real trick to get through it. It was just learn along the way, like like anything with motherhood you learn along the way.

So, when he was really little, I would be able to do my physio with him either in the bouncer next to me or in his wrap on me or now that he’s a bit older, trying to time things while he’s still asleep. And, yeah, just learning different tactics of how to get, get physio done with him. You know, sometimes I have to stop and go and tend to him and come back to physio. And that’s just what those days are like.

Now that he’s a bit older, it’s, in some ways easier, in some ways harder. If I can get up and get things done before he’s awake, that’s great. Now that he’s older and climbing, he likes to try and pull the neb out of my mouth. That makes it a little bit harder. But we just managed and work through it and took the time I needed to get my physio done and make sure that I was staying on top of that.

Postnatal | Motherhood

Yeah, so my little boy’s name is Cade. And he’s 10 months now. He’s like the best thing ever. He’s started crawling and climbing on things and is probably any day away now from walking. Jared and I were obviously concerned that he might have CF. And before we tried for a baby Jared was tested several times actually. And then he had the heel prick test done when he was born and that came back clear which was the best thing to know that he wouldn’t have CF as well. Not that there’s anything wrong with having a baby with CF but having CF and having a baby with CF that’s a lot to manage. So, you kind of need to be prepared, if that’s going to be the case.

We really, really, really wanted to have a family for years. So, we’ve been really lucky. He’s super happy, energetic little baby that loves his food and loves playing and loves people and, and I had such a good pregnancy and he’s healthy, and I’m healthy. He’s just been the best thing in the world.

Postnatal | Childcare

So now that I’ve gone back to work, he has started at childcare. And obviously, now that he’s there, he’ll start to pick up all of the gems as well. And I think it’s just, it’s, again, it’s another aspect of our life that we just have to manage. I have to work. But you know, I don’t want to, I don’t want to stop him from having the experiences of going to childcare and meeting people and meeting friends. So, you know, we do what we would normally do. There’s a lot of hand washing, there’s a lot of cleaning of things and just managing I suppose as the rest of the world’s had to learn how to do those kinds of protocols now with COVID, like what normal CF people would be doing anyway, to keep ourselves healthy and safe from germs.

I’m really fortunate that my job has meant that I’ve worked in childcare settings for a long time. So, I’m used to all the germs and bugs that would come, comes with that. He’s definitely started getting the childcare sniffles. So, we’ll see how we go. But for now, we just, we just manage it like we do everything else.

Advice for prospective parents

For anyone in a position where they’re trying to either get pregnant, or they’re thinking about it, or they’re trying to get information about what life would be with a baby. Personally, I would say it’s probably a little bit case by case. As I say, when I was trying to get pregnant and looking at information all of the other CF people that I had found out about nothing really fit in my category. I remember in the early days, I think googling CF mums and pregnancy and just there would be like one or two articles. I feel like especially in the last couple of years, there’s been a lot more information about CF women having babies and there’s a lot more places where you can find that information.

I’m not a very big person that likes to get involved with lots of other things. I’m kind of introverted in a way but finding other CF mums on Instagram and just being able to see oh that’s a CF mom, and she’s got a baby. And she’s just doing normal things, or you know, she might be talking about doing physio and I recently reached out to a lady in America who was doing her nebs and her baby was pulling the neb out of her mouth and I said, that’s exactly what my baby does.

So, it doesn’t have to be a big, big community but just finding yeah, finding just the everyday aspect of being a mum with CF without it being this big topic. It’s just you have CF and you’re a mum and that’s your baby and you’re going about life. So, I would just say, do your research, do as much as you can. You know within yourself, what you’re capable of. You’re your best advocate. And if you think you can do it, go for it because it’s the best thing in the world, best thing ever.

“You’re your best advocate”—Shelley on pregnancy and CF