When Emma Corr welcomed her second daughter into the world, she didn’t expect to have to take her home with a suitcase full of medicines, tablets and medical equipment.
Little Harriet was diagnosed with cystic fibrosis at 12 old, after undergoing a lifesaving operation to unblock her bowel.
‘Harriet was born with a rare condition called meconium ileus which affects approximately 1 in 25000 babies in the U.K. each year,’ Emma, 36, explains.
‘Babies fail to pass their first stool, meconium, because it is very sticky, causing a blockage. This is almost always the first indicator of having a child with cystic fibrosis.’
‘No one can prepare you for that kind of news. We had no family history, a fit and healthy two year old, so how on earth could this be happening? We felt as though we were living some horrific nightmare.’
After receiving support from the cystic fibrosis team at their local hospital, the family were able to take Harriet home after two weeks – relatively early for a newborn with meconium ileus, who can often spend months in hospital.
However, life with their new baby was daunting for Emma, husband Chris, and elder daughter Nancy, as a revolving series of medical professionals began to come through their front door: specialist doctors, nurses, dieticians and physiotherapists, as well as the usual health visitor and midwife checks.
In the early months of her life, Harriet needed up to 11 syringes of different medicines per day, as well as creon to help her digest her food properly, and two 20 minute sessions of ‘percussion physiotherapy’, which consists of patting different sections of her chest for a set period of time.
Now two years old, she still has to have an array of treatments every day to keep her strong and healthy. She’ll have a steroid inhaler, six syringes of different antibiotics and medicines, and creon before she even eats her breakfast, which is followed by her first physiotherapy session of the day.
‘I make sure she has snacks as CF patients are advised to follow a high fat, high calorie diet,’ Emma details. ‘It can be very difficult to gain weight. Again, with every meal or snack Harriet has to have her medication. Before her evening meal she will again take more medicines and antibiotics, another extra pill to help absorb her food and then her nebuliser and inhalers. When she is ready for bed she will have her second session of percussion, which usually sends her off to sleep.’
‘This all sounds a lot but if it keeps our precious girl well we will do whatever it takes.’
Emma adds that between the treatments, she tries to make family life as normal as possible, but parents of children with cystic fibrosis still face many challenges, on both a daily and a long-term basis.
‘Life expectancy is by far the hardest thing to deal with,’ she admits. ‘Being faced with the prospect of outliving your child is something I would never wish any parent. Survival rates have gone up so rapidly in the last few years and with the advent of potentially game changing, precision medicines on the horizon we can dare to believe that Harriet could lead a full and healthy life.’
‘At the moment she goes to nursery and does everything her older sister does so fingers crossed that can continue. She goes to nursery, football and has such an active social life. She is a joy to be around.’
‘Nancy, who is now five, is aware of cystic fibrosis and that her sister has to go to hospital a lot and take lots of medication but she has no idea why. Thankfully she is too little to head off to Google and read the horror stories on there but obviously we know that day will come and we face some very difficult family discussions.’
Despite the struggles, the Corrs have also found that cystic fibrosis has brought them together with other families going through the same experience.
Through her blog, Emma has met another local cystic fibrosis mum with two girls of similar ages, but sadly they cannot meet up with their children, as people with cystic fibrosis cannot meet each other for fear of cross infection.
‘It’s so sad as I know the girls would love to all play together,’ she says. ‘On one occasion when we were in hospital at the same time the closest our girls got to each other was looking through a glass door across a corridor. It was totally heartbreaking.’
‘All communication and support is online only – but I have been lucky to find a group of cystic fibrosis mums through an online support group who I chat to every day which is also a massive help. Despite being scattered across the U.K. we have decided to join forces to raise as much as possible for The Cystic Fibrosis Trust. In June we will take on Great Strides 65 challenge which will see us walking 40 miles in one day – no mean feat!’
‘From the moment Harriet was born she has taken everything in her stride. We have been so lucky that she rarely kicks up a fuss about anything, she is very happy and chilled! She has to swallow so many disgusting medicines, cough/gag on frequent cough swabs to check for infection and lets doctors poke and prod her at every check up.’
‘She puts all of us to shame – I’ll never moan about a cough or cold again after seeing what she has gone through already in such a short space of time.’
What is cystic fibrosis?
Cystic fibrosis is an inherited disease caused by a faulty gene. This gene controls the movement of salt and water in and out of your cells, so the lungs and digestive system become clogged with mucus, making it hard to breathe and digest food.
Two million people in the UK are carrying the faulty gene without realising it. You could be one of them. If two carriers have children, there’s a one in four chance their child will have the condition, which slowly destroys the lungs and digestive system.
People with cystic fibrosis often look perfectly healthy. But it’s a lifelong challenge involving a vast daily intake of drugs, time-consuming physiotherapy and isolation from others with the condition. It places a huge burden on those around them and the condition can critically escalate at any moment.
Cystic fibrosis is a life shortening genetic condition – only half of people with the condition will live to celebrate their 40th birthday.