Cystic fibrosis campaigner and author Emmah Evans (CF Mummy) discusses her pregnancy journey and offers advice to other women with cystic fibrosis.
Written July 21st 2016
When I fell pregnant with our first child, Ayvah, I remember wanting to write about it by keeping a journal to look back on one day. After ten positive pregnancy tests in 24 hours, we were definitely pregnant – to then have the late night after hour’s doctors confirm that we were indeed pregnant. Shortly after, I remember buying my first book on pregnancy – Up The Duff – a month by month guide on pregnancy, from symptoms to feelings. It became my regular read.
I had never before come across a book for women who had Cystic Fibrosis and had gone through pregnancy, yet nothing positive came from a Google search about having CF pregnancy – let alone being a mother with a chronic illness.
I had so many questions, worries, and emotions, as many women do when getting the BFP (Big Fat Positive) – but adding CF into the equation pushed me into unknown territory.
It was then that I decided I wanted to write about my pregnancy, and the treatment I underwent whilst pregnant as well as post pregnancy. I was excited to have baby number two and again documented the journey by keeping my own diaries.
Now here I am with two children, a 3 year old and a 1 year old.
I am excited to be in the last stage of writing my pregnancy story, and hope to release it later this year. What an exciting journey it has been, and now motherhood is the most rewarding yet challenging role I will ever embark on.
I had so many questions, worries, and emotions.
I want to answer a few questions that I have often been asked. Whether you have CF and hope to have a baby, or you just want some information, I hope that I can provide some hope as well as answers.
Please remember, I am no doctor and am far from qualified to be giving advice. This is my story and I speak only as things happened to me.
I came to a point in my life where I was at the peak of my career. I worked hard to get into leadership, and I was able to help bring the best out of people – to encourage others, motivate and guide people to reach their full potential, which is something I am so passionate about.
So Motherhood. I had always wanted to become a Mum, but I never knew if it was possible. I have always liked children and I remember it was like waking up one morning and someone had flicked the on switch in my body, the maternal switch. I literally woke up and knew I was ready to embark on the TTC journey (Trying to Conceive). My husband and I knew that it was almost impossible for us to fall pregnant naturally so I began researching. The Internet was resourceful, but only in the way of discouraging a woman with CF to have a baby. Why have a baby when you know you will have a shorter life?
I found more negatives than positives, that’s for sure. However, I came across a few other women who have CF and had children of their own, which gave me hope.
All I knew is that it was possible, so I began researching the potential risks and complications, as well as what options were available.
I looked at insemination, IVF and other fertility treatment options, as the main findings of my research stated that the mucus is a lot thicker for the sperm to travel where it needed to in order for a baby to be made.
I spoke with my doctors and fortunately my lungs have always been a high percentage FEV1 95%, as it takes a lot of behind the scenes work to keep “healthy”. They said that if I could maintain my health then I had a good chance of a successful pregnancy. I remember leaving and thinking I would suggest IVF or insemination to my husband, and did a bit of research to find that there was a cost attached.
Long story short, my next visit to the doctor was only three months after the conversation, and at that point I was three weeks pregnant. Completely naturally, no fertility treatment, just two people who were lucky enough to naturally conceive. With my weight being around the 58kg mark and my lung function at FVC1 100%, I couldn’t be in better health to start a pregnancy.
As my bump grew, my lung function did fluctuate, but never to a low figure – I was the healthiest I had ever been throughout my first pregnancy. I obviously gained baby weight and I had the glow. Nick was tested to see if he was a carrier of the CF gene, because if he was a carrier then our children might have CF, though luckily the test came back negative. Having CF means that our children are only carriers of the gene. When they eventually marry and have children, they will be able to get their partners tested and if it is a positive for the CF gene, their children will have CF. I pray to God that CF is cured by the time my children are of age to have kids.
It is an invisible disability, with invisible suffering. This is a blessing in disguise at the best of times.
I pray to God that CF is cured by the time my children are of age to have kids.
Because my pregnancy was high risk, a team of medical staff regularly reviewed me.
As diabetes is common in older CF patients, with each trimester I underwent a glucose test to ensure gestational diabetes didn’t develop.
Thankfully with both pregnancies I stayed diabetic clear. However, during the pregnancies, I learnt that if I were to develop diabetes it could effect the growth and development of my baby, so managing my blood sugar levels daily was added into my care plan.
Early into my pregnancy I realized that it wasn’t just about me anymore; it was my baby and I that became priority with health care. I felt like a parent immediately, and the worry of being a parent has never left me.
My lung function maintained between 95-100% FVC1 post pregnancy, and I remained healthy up until I returned to work. I worked three days a week, and as my husband was also working full time, Ayvah was placed in childcare. Unfortunately, I began to see a decrease in my lung function, my energy decreased, and I became frequently ill. I breastfed Ayvah up until she was 9 months old, though stopping was on her account, as she decided she didn’t want boob anymore. This was probably a blessing in disguise, however, because I was underweight and breastfeeding did not help my energy levels and sickness.
I had to take so much time off of work that I was barley there, which was really frustrating and embarrassing for me. I hated calling in sick, I hated having to always be spoken to about my absence and duty of care – I felt like a broken record. My lungs still remained around the 80% mark, but for me that was scarily low. I hated the idea that this level could be my new “best.”
When Nick and I spoke about another baby, we knew it was a possibility and decided to try for a few months.
Being underweight and not at my healthiest, I thought it would be a real struggle to fall pregnant. Being a control freak and a bit of a self confessed OCD sufferer, I knew that I didn’t want to be pregnant for our wedding in October 2015 – not that you can always choose, because if it’s meant to be then it will be.
My research began again: CF and pregnancy, real stories of other women, yet again I found nothing positive or encouraging.
I came across this lubricant, which a few people laugh at when I tell them, but when I confirmed if it was okay for me to use, it was a further affirmation that we were happy to try and conceive. The lubricant is called Pre-seed, which I purchased online, and you basically use it prior to “baby dancing,”as it helps the sperm travel to the right places and ideally helps you conceive. I had read a lot of success stories and thought there was no harm, as we had been getting negatives month after month. I was disheartened and wanted so badly for a sibling for Ayvah. Especially while I felt that my health could go through a pregnancy, having the room for my lungs to decrease, while knowing with hard work I could get them back up.
Anyway, long story short, with the first month of using the lubricant, tracking my ovulation, it was obviously meant to be. We found out very early that I was pregnant, after only about three weeks.
My second pregnancy was very different to the first, as I was sick from the moment we got our BFP (Big Fat Positive) up until the delivery of our little man. It started off as morning sickness, the nauseousness all day, then later effecting my CF. Bubs was pushing up on my lungs, so towards the last few months of pregnancy breathing was almost unimaginable – I really struggled. I couldn’t even talk properly without coughing, which was awful. I was constantly having inhaled antibiotics, and my other inhaled treatment, oral treatment, and physiotherapy were all increased. It was exhausting having to look after myself so much, but I needed to if I wanted to remain healthy enough to support the pregnancy and for Ayvah.
During my second pregnancy, I underwent an iron infusion as well as intravenous antibiotics. I was so nervous and hesitant about having IV treatment, as I did not know how it would affect my baby. All the medications that I was given throughout pregnancy were all safe, and thankfully there had not been any “horror” stories. As far as medications, there was a limit on what I could have, but with a great medical team we were able to work around the issue. One of the biggest challenges I faced throughout pregnancy was the constant demand regarding self-care. My days felt like they where spent constantly doing treatment. Keeping my body healthy became exhausting in itself.
Due to the deterioration in my health in my second pregnancy, I was induced early. I was 37 weeks and 3 days pregnant when our little man was brought into the world. My lung function was on FEV1 of 83%, which might not seem low to some, but for me it was. I was really struggling with the pregnancy and with CF. I was so worried about being induced and the potential problems it might cause, though due to my poor health I didn’t really have much say in the matter. Thankfully, however, our little man was ripe and ready to be born. Looking back I am glad we didn’t go full term, as a few extra weeks in my belly, and I could have been looking at a 10 pounder.
No one can prepare you for what sort of mother you will be, how you will react, and what you will do.
Due to being high-risk, I had an epidural because the doctors didn’t want anything to go wrong. If it did, however, they were prepared. In comparison to other labor stories, I feel lucky to say both of mine went as well as they did.
I smile at the thought of my labor for both of my babies. With Ayvah, my sister did a full face of make up for me, as we had some time to spare (labor was not quick with her) so I had my bright red lipstick and my diamond earrings, ready to meet my beautiful princess. With Logan, it was just Nick and I in the room, I was calm and felt so in tune with my body that I knew when he was ready to come out. It sounds bizarre to some, but I remember feeling like I had canal that Logan was ready to go down.
With both babies, I remember feeling them come out of me, and what an experience that was! Nick wasn’t going to watch, but he did both times. I remember feeling the legs, the shoulders and, of course, the head, all coming out of me like a little rubber alien. The female body is so amazing – to have life inside of you for 9 months, to then deliver a baby, it is a truly special experience. I feel so blessed that both labors were not complicated and that both babies were born healthy.
From the moment Logan was born, my cough stopped and I felt like a big weight was taken off my shoulders. It was very challenging during those first few months after he was born – juggling a toddler, a newborn, and CF. I found it especially challenging to look after myself when my health wasn’t at 100%.
No one can prepare you for what sort of mother you will be, how you will react, and what you will do. I did not imagine I would be the way I am, though the love you have for your children is indescribable – I would do anything for my babies. They are my priority, my world, as is Nick. I feel that a lot of my past has influenced the mother I am, and I know having my mum being the superwoman she continues to be is the greatest example for me to look to.
To reflect to date, looking after myself and my health needs have been unintentionally put on the back burner. I have two little ones who are dependent on me, every mother could relate to knowing about “me” time – what is that?
My lung function for the past year has sat on mid 80’s reducing the low 80’s in recent months of sickness; it is scary because I hate to see the number decrease. I don’t want it to decrease, so it gives me motivation to work hard to get it back to a “safe” number. In June, I was sitting on an FEV1 of 81%, now just over a month after treatment, I have managed to get it back to FEV1 99%. Its bloody hard work, so much going on behind the scenes, things that people don’t know about to just stay healthy, but to have numbers show up like that brings me satisfaction.
I hope to be the Mum that can show my kids that anything is possible, no matter what extra hurdles are thrown our way.
Overall, I am blessed to have experienced healthy pregnancies, have healthy babies and now be on this journey called motherhood. I have a beautiful supportive husband and together we have a great support network around us. No one can prepare you for the post pregnancy life. Falling pregnant and having the babies was the “easy” part, now living with a chronic illness daily and ensuring I am healthy is challenging. I want to have the energy to run around the park and play games, I don’t want to feel lethargic, and I don’t want CF to be a reason for me to fail at motherhood. I can’t change that I have CF, but I can change the way I live with it.
I can change the way my kids see sickness and hospitals, the way my parents showed me.
I hope to be the Mum that can show my kids that anything is possible, no matter what extra hurdles are thrown our way.
To show them after the cloudy times in our life to always look for that rainbow and get that pot of gold.
As I said earlier, CF and Pregnancy that was the easy part…the next part, I’m a mother forever now and that opens a whole new can of worms