Chloe and Evie's Story

Your stories 24 March 2022

Chloe's daughter Evie was diagnosed with dilated cardiomyopathy (DCM) when she was three months old. Chloe shared her and Evie’s experience with us in the hopes that it will help other parents and families that are going through a similar journey.

Chloe and Evie

In June 2019, Chloe gave birth to a beautiful baby girl, Evie. Within the first couple of months, it was clear something wasn’t right with Evie’s health. Chloe was persistent that the A&E doctors investigate her condition and perform further tests on Evie. After a chest x-ray was performed it showed Evie had an enlarged heart, which led to her being diagnosed with dilated cardiomyopathy (DCM) at just three months old.

“Initially, Evie had bronchiolitis and struggled to get rid of the symptoms. There were a number of red flags and I just felt something wasn’t right, so I took her to our local A&E. Evie was only 3 months old at diagnosis, and with the symptoms being common in so many other conditions, it was unclear at first as to what was wrong.


Initially, it was a possibility that it was myocarditis as she did test positive for enterovirus. When there wasn’t any improvement in her condition, the doctors began treating her for dilated cardiomyopathy. This came as a total shock to us. We have no family history of cardiomyopathy and since Evie’s diagnosis, we have all been screened.

Evie's signs and symptoms

Evie was struggling to overcome a number of symptoms which is what initially prompted me to seek further advice. Evie’s main symptoms were:

  • Failing to thrive (wasn’t gaining weight)
  • Pale complexion
  • Working hard to breathe
  • Puffy from fluid
  • Sweaty and clammy
  • Not having bottles
  • Lack of wet nappies
Baby Evie

Getting a diagnosis

Thankfully, the process of diagnosis wasn’t very long. Evie was unwell for two weeks without any signs of improvement, so I kept persisting with A&E to check her over, which eventually they did. When they performed the x-ray and it showed her enlarged heart, she was transferred to the Freeman Hospital the next day. It is somewhat disappointing that had an x-ray been performed earlier on, her condition could have been uncovered sooner. On arrival at the Freeman Hospital, an echocardiogram (ECHO) was performed, and Evie was diagnosed with DCM on the same day.

I was completely heartbroken for Evie when we received her diagnosis. At the time, I didn’t know much about her condition, and I had no idea what the future held. After hearing the words ‘heart failure’, I knew that her condition was serious. My mind immediately jumped to the thought of a heart transplant as I was just so scared of losing my daughter and all I wanted was her to be fixed.

Before Evie was diagnosed, I thought that someone with a heart condition would be at serious risk of death and heart attacks. My thoughts haven’t changed much since then, as I’m aware that it is still very serious, but I understand a lot more about different heart conditions and the options available to manage them like medication, which thankfully Evie has been stable on so far.

How Evie's condition affected us

Baby Evie

Living with cardiomyopathy has made our lives more sheltered, especially with the risk of COVID in the last two years. I do find myself incredibly wary of taking Evie to busy places and entertaining the children. The worry never goes away but despite this, I do feel that we still have a good quality of life. It is just a huge worry at her age having her mix with other children. I feel like when Evie goes to school, she will be a bit more vulnerable, which makes me feel incredibly scared to send her. But at the same time, I also know that she does need to go, and it could even build her immune system and strengthen her more.

When Evie was first diagnosed, I was four weeks into a new job. I feel like I have been incredibly lucky in the support I have received from my employer. I was open and honest with my manager as soon as we received the diagnosis. As my manager is also a parent, it helped him understand the struggles of having a child that isn’t well. Knowing it was such a serious condition also made him very understanding. From my own experience, I feel that parents should try and discuss the journey with others including their employers, so they understand the difficulties.

Living with cardiomyopathy 

As a parent, I have found a lot of people suffering from cardiomyopathy are adults, so finding other people in the same position is very difficult. I still to this day only know one person whose child has this condition and is currently stable. A lot of the children I know who have suffered with the condition have gone on to transplant, which is good of course but it also makes me sad to think that it could be us one day.

Evie is now two years old, and thankfully her condition is currently stable and manageable with medication. She is a happy little lady, and her strength continues to inspire me every day. The uncertainty of life is definitely hard to accept but it does get easier with time.”

Evie at 2 years old

Here at Cardiomyopathy UK, we provide a range of services to help support parents and families affected by cardiomyopathy. We offer telephone peer support, support groups, and our nurse’s helpline for anyone affected by cardiomyopathy. We also have support resources for children who have been diagnosed with cardiomyopathy.

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