“The first few hours, days, weeks, or months may be difficult, but it does get easier”: Emma’s Mother’s Day story

My name is Emma and my husband’s name is Joe. We have been together for 16 years and married for four.

We tried for a baby for two years and I was about to have IVF when I found out we had conceived naturally. We knew nothing about CF and had no idea we were both carriers of the CF gene.

Matilda’s diagnosis

Just before Matilda was born, I had several episodes of reduced movements, which prompted an emergency scan. The doctors found fluid around her stomach, and I had excess amniotic fluid. After many blood tests and an amniocentesis, combined with more reduced movements, Matilda was born via emergency C-section.

As she was five weeks early, she was rushed to NICU, where they discovered she had a ruptured bowel. She underwent emergency surgery at 10 hours old.

A week later, we found out from the newborn heel prick test that she had cystic fibrosis. We were both shocked as nobody in either of our families had cystic fibrosis. I remember crying to my mum down the phone and saying, “I just wanted a healthy baby.”

Being told the life expectancy was awful to hear when our little girl was only just a week old. I spent the next few days reading up as much information as I could on CF, both good and bad.

Two days after we found out about Matilda’s diagnosis we had a meeting with the CF team from the Royal Manchester Children’s Hospital. They were absolutely amazing. They gave us lots of information packs from the Trust and answered any questions we had. Matilda was supported by the doctors, dietitians, and physios while she was in NICU for three months.

Life is still tricky at times, but we’ve finally got our heads around the endless list of medication and daily physio. I still worry about her when she gets coughs and colds, but we are incredibly lucky to be supported by our local hospital’s CF team who are always there if we need them or need advice.

My advice for other new parents

Don’t look on Google at the life expectancy of someone with CF. Try not to read too much into other people’s experiences with CF as everyone is different. The first few hours, days, weeks, or months may be difficult, but it does get easier. Always advocate for your child as you know them better than anyone else, and try to let them grow up as close to normal as possible.

My top tip would be to make a medication list. We used to have a list with the names of the medication, dosage, and how often it needed to be given. As sleep-deprived parents, trying to remember dosage information at 2am when making up a bottle was near impossible – the lists saved us! We found it best to get her into a routine with medication and physio, and we try and stick to it as much as possible.

Taking time to look after your own wellbeing

When Matilda was very young, we both really struggled; she was on a three-hourly feeding schedule and there didn’t seem to be enough hours in the day to even accomplish small tasks like going for a run or simply taking a shower. Now we are in a routine we know when we have free time and try to allow each other to do something for ourselves – whether it’s a quick coffee out with friends or a date night.

Talking about CF to friends and family

We told our friends and family as soon as we found out. As you can imagine, a lot of people were shocked and asked questions about CF that we really didn’t know the answers to. We now openly discuss everything with family and friends and feel a lot more confident telling strangers about her condition.

What I wish other people understood about CF

The most annoying thing I’ve faced as a parent was someone once saying, “Oh, is CF that condition where you have mucus on your lungs, it can’t be that bad.” It’s not just issues with the lungs – it’s way more than that. It’s having liver issues, pancreatic insufficiency, daily physio, sanitising and sterilising everything to try and prevent illness, constant doctors and hospital trips and blood tests, looking at the fat content of everything she eats, remembering medications and Creon before leaving the house.

My hopes for the future

I hope that medical research will continue to improve medication to help people with CF, even those who may not be able to benefit from modulators.

We know that Mother’s Day can be tough for lots of people, for a variety of reasons. Your CF team may be able to provide emotional support or direct you to other sources of support.

You can also contact our Helpline on 0300 373 1000 or at [email protected] if you'd like information or support, a listening ear, or just to talk things through.