Tell me a bit about your life living with CF before becoming a mum. Was becoming a mum something, you always wanted/needed in your life? My story is very unique and I learnt this from a young age, it was because of my story and my upbringing I also learned how to change the negatives into a positive. I was only a few weeks old when I was given up for adoption because I was born with Cystic Fibrosis. The most common life-threatening heredity illness effecting Australians today. It primarily effects the lungs and digestive system. My adoptive parents, who are my parents, two amazing people. My Dad a paraplegic with 1 leg and 1 hip and my Mum the ultimate woman. They adopted me knowing I had CF and wanted to give me a normal life, despite what doctors said. Life we defiantly different for us, I spent many weeks hospitalized growing up undergoing intravenous antibiotics to fight chest infections. I missed out on a lot of school time but still my parents managed to keep life as normal as possible. I was bullied throughout high school and found in year 11 I had a turning point, I fell very ill and it was after receiving a make a wish from the Make a Wish foundation I had a new lease on life, as I found myself healthy. I was in year 12 when I won a national magazine Girlfriend competition, it was winning this that I became the youth ambassador of Australia for Cystic Fibrosis. I went onto do many wonderful things in this role. It was also this year that I accidently found my biologically family after they had been told I had passed away. It was a very big life changing year for me. I was featured on the ABCs Australian Story who beautifully told the story of how I found my birth family. I went on to speak around the country and continued to fundraise and raise awareness for CF. I also graduated high school, studied and then went onto travel the world over the years. Doing many things that people thought were impossible, from skydiving to swimming with beluga whales, I made it my mission for myself to never let my illness define me. After winning many awards, raising lots of money and finding happiness and being content with life, my list of too do’s was never a list of impossible seemed to be never ending.
What was the turning point for you when you knew you needed to embrace motherhood and wanted to start trying for children? After having accomplished so much, I remember being very content with my world, I had my partner, my family and friends and I genuinely just woke up one morning and knew I wanted a baby.
What kind of research and resources helped you to figure out if you could have a baby? Unfortunately when I started researching Cystic Fibrosis and pregnancy, I found it very hard to find anything readily available that was positively factual. I had the verbal advice from my CF medical team, which was very little due to the small amount of CF women who had CF pregnancies. As we all do, I found myself googling and using forums for support from women from around the world who had fallen pregnant naturally as well as learning about their experiences with pregnancy and CF. I found this very challenging as many stories were not all positive and I found this at times to be disheartening. It was in this moment I realised I needed to look at my own health and not read other “stories” and work out what pregnancy meant for me. I looked at my current health and the position I was in. One of the huge factors we look at is our lung function. Lung function is a vital test done every 2-3 months to help monitor our lungs and it is through this we can effectively manage our treatment and management of our CF. Thankfully for me, I have worked very hard every day to be consistent and compliant with treatment so I have what you would consider “good” lung function. So when I was looking at the pregnancy in itself, I felt confident that I had enough lung capacity to allow it to decrease if need be. I had to take into consideration as the baby would grow, it would push against my lungs and cause breathing difficulty As well as growing a baby, it takes a lot out of you, so there were many factors to consider.
How did you stay positive throughout trying for a baby? What helped you the most? I found this very difficult, because for me, I woke up and the maternal switch turned on inside of me like a light switch. I wanted to be a Mum so badly. Having been adopted myself, I knew there was always adoption and other ways to have a child, but I longed to carry a baby of my own, in my belly and go through those weeks. I think I remained positive because I didn’t let CF be a reason for me to feel that it was because of that I wasn’t going to get pregnant. I remember tracking my ovulation in many ways, this helped me feel “normal” I also looked at many forums and as I did this and found the support of other women, I wasn’t the only one struggling to fall pregnant. I had been of the contraceptive pill for over 12 months, I had friends falling pregnant around me and I remember this was hard for me. But I continued to look after my health and prepare my body for the journey I was hoping to soon embark on, that being pregnancy.
How did it feel when you found out you were pregnant? The day I found out I was pregnant with my daughter is a day I will never forget. The day before I found out, I had attended yet another CF friend’s funeral, she wasn’t even in her mid-twenties. It was one of the saddest funerals as only a few years prior she also lost her sister to CF, this same family also lost another child to CF. These two-amazing people lost 3 children to CF. I remember watching her coffin be laid into the ground and I stood next to a very dear friend of mine who also has CF, his wife, was pregnant. They had gone through IVF as most men with CF are infertile, for them, IVF was the way for them. But as we watched our childhood friend get lowered, we looked at each other and I said to him, “we cannot have this happen again, we have seen to many friends pass away, we need to change this. We need to be healthy and we need to create a new generation of strong children” I left that afternoon feeling depleted, I shared a glass of red wine with a good friend of mine and just felt completely shattered. The next morning, I woke up from a dream that felt so real. I have lost more friends than I have fingers, so to put that in perspective, imagine a room full of children. I woke myself up from hitting my head with my elbow, it was in my sleep I had my friend who had passed away, trying to grab my hand to tell me to come with her, to come with all of them. As I looked, there she was with all our friends who had passed. They were running freely and not sick. I remember almost wrestling with my friend to get my arm out of her hands as I yelled, I am not ready to come, I can’t come. They say when you dream of death it means new life. Well I just had a feeling. It was the middle of the afternoon, I decided to pee on a stick, hoping for my BFP (Big Fat Positive) I sat in the toilet and as those two lines quickly appeared, I was in shock. I was pregnant. 25 pregnancy tests later, I will still pregnant.
What kind of challenges, mentally and physically, did you face while you were pregnant with CF and how did you overcome them? When I found out I was pregnant, I already had a work trip planned for the USA, I was frightened as I knew I would be travelling and that first 12 weeks is such a scary time. Every day seems to drag and you just want to hit the 12 week mark to know you can “announce” it to everyone. Because I was overseas, I missed out on the 12 week scan, but given my CF I was high risk as it was. This in itself instilled fear over me at times but I had to just remain positive and look at what I was in control of in order to get through the negatives. Upon my return, I was 16 weeks pregnant and had undergone scans and multiple tests, I will never forget the day, I was sat at work and received the phone call from the nurse at the hospital to advise me very casually over the phone they needed me to come in to see them as my blood tests had come back high risk, a 1 in 28 chance that my baby would have down syndrome. This just brought so much worry and concern over me. How could I be a mum with a life-threatening illness and potentially have a baby with a disability too. I just didn’t know how we would manage. I opted not to undergo the amino test as I knew that whatever was growing inside of me, this baby and I had a connection and I would love the baby endlessly, no matter what happened. I didn’t want to risk an amino and the thought of a miscarriage. For the entire pregnancy, I had a worry the baby would have down syndrome. This more concerned me because of my own health. I remember researching so much more into down syndrome and the care and how we could best give our baby life if this was the case. I got to a point where it didn’t matter, this baby was going to be beautiful and so loved and that is all that mattered. Throughout the journey of pregnancy, I started my own social media page CF Mummy, it allowed me to share my pregnancy journey through blogging. Now today, I have followers from a diverse range of people, some with CF, newly diagnosed families and many more. It as become a great platform for me to raise awareness but also show what it is like being a Mum with CF and all the amazing things I do! From a CF perspective, I was the healthiest I had ever been with my first pregnancy. I was still in high heels at 37 weeks pregnant and loving my bump. I went into labour on my due date and delivered by baby girl naturally. My second pregnancy I struggled more and was induced at 37 weeks, I struggled with infections for myself and as my little man was growing nicely, he was ready to come out to the world and not be at risk. So here I am now, blessed with two beautiful, strong minded children.
How do you feel now that you've had two beautiful children and doing all these amazing things to advocate for CF? Becoming a mother has been one of the greatest’s gifts I ever imagined. It has given me more reason to have purpose for my life and for what I need to do. I want my children to be proud of their Mum and to not see disability, that being invisible or visible a reason to fail. I want to ensure my children are supported in their own dreams and make sure I am here to allow them to live an exciting life. To run around with them. I feel truly blessed. They have given me life just as I gave them life. It’s not always easy, we face many challenges, but I think everyone does no matter who you are. It is how we choose to respond in those circumstances and move forward in a positive way. As an advocate for the entire CF community, I mentor other CF families and patients, I am continuously fundraising for Cystic Fibrosis, as an ambassador for the Cure4CF Foundation, I am passionate in sharing the work they do, as they provide financial support to CF research, it is this research that will one day be the reason we are cured. Which is a high priority of mine. I am also very proud to be an author of my autobiography, The Words Inside, which was published when I was 17. With my second book to be released next year, I am very excited. I am passionate about motivating others, through sharing my own personal stories and life lessons, I now go into organisations around the country where I host empowerment presentations. And this past year, I have had a great focus on working with schools around the country, with a strong focus on resilience and overcoming adversity, empowering students.
What would you say to a woman who is struggling with CF or trying to become a mum? I think it is important to work closely with your medical team. Ensure your health is ok. If you are not healthy you will not be able to function, as a mother, you need to be able to function. You learn very quickly that you put your needs on the back burner and become selfless. So, at times, we need to be selfish, this is something I am still learning. Selfish in the sense, I have to spend time every day doing treatment, but if I don’t do this, it means I won’t stay well or have the energy to be a good Mum to mu children. Seek support from other women who have been pregnant or who are also going on the journey, as it is through these support networks you can gain an insight, difference of opinions and have the support of other women going through your struggles too.
What plans do you have for this year? As this year’s 2020 Australian of the Year, SA Local Hero, I have some great plans. I am working on my second book, about Motherhood and CF as well as the many things that have happened in between. This is set to be released for Mother’s Day next year. I also am going to continue to work with the schools around the country, I feel it is so important to teach our youth the importance of self-belief and resilience, I have worked hard to ensure my presentations align with the health and well-being component of the Australian Curriculum so it is aligned with key learnings for students. As well as working closely with corporate organisations, to help staff to feel valued and empowered. I am extremely passionate in sharing many messages. MY advocacy for the CF community continues, as I am also setting up a few exciting programs here, so stay tuned. Lastly, my biggest plan is to stay healthy and be a good Mum to my beautiful children. For more info follow me on social media, @CF Mummy or visit www.emmahmoney.com