For most new mums, life after having a baby brings big changes and new challenges but for Claire Toner, 40 from Clady, never in her wildest dreams did she think it would also mean having to deal with the news she had a life changing long-term condition, heart failure.
Claire is sharing her story in support of Northern Ireland Chest Heart & Stroke’s (NICHS) current heart failure awareness campaign. The campaign aims to increase public awareness of the condition and Claire hopes speaking out will help put a spotlight on heart failure, its symptoms, and encourage people to seek medical advice if they are experiencing any signs of the condition.
Claire explains; “My little girl, Aoibhe, was born in August 2023. It was a long-awaited day as my husband, Liam, and I had gone through seven years of IVF to have our beautiful daughter.”
“The morning after we got home from hospital, I felt very unwell. I was short of breath and there were crackling noises in my chest. After ringing Dalriada Urgent Care, I was advised to go to hospital. We went to A&E at Antrim Area Hospital, where they discovered fluid in my lungs, and I was admitted to the cardiology ward for further tests. I was on oxygen through the night, and I couldn’t sleep as my breathing got worse when I lay flat.”
“The next day I was diagnosed with peripartum cardiomyopathy, a rare type of heart muscle disease which occurs during the last part of pregnancy or after childbirth, as well as heart failure. It was the biggest shock, I felt like I was in a dream. I knew I wasn’t well, but I never imagined hearing news like that. I had an echocardiogram which showed my ejection fraction, which is the amount of blood squeezed out of the main chamber of the heart with every heartbeat, was just 18%. After everything we had been through to have Aoibhe I thought, ‘why is this happening to me?’”
Claire continues; “I was told I needed to be transferred to the Royal Victoria Hospital where I was treated for almost four weeks. It was ten days before I was even allowed out of bed to try walking up and down the corridor. It was a really tough time, but the worst part was obviously being separated from my newborn daughter. It was terrifying to be told I had these conditions, but I had just had a baby and not being with her was heartbreaking. I should have been at home enjoying time with my new family and instead, I was in hospital, alone, and scared of what the future held. The nurses and doctors at the Royal were very good and answered my questions as best they could but some of their answers were ‘we just don't know’ and ‘it all depends how you respond’. I didn’t Google heart failure as I was so afraid of seeing things like ‘expected life outcome’. I just took one day at a time.”
“Fortunately, I had a side room in hospital which meant Liam could bring Aoibhe up to see me every day. Them being able to visit was the only thing that got me through, I wouldn’t have otherwise. It was obviously a terrible time for Liam too. He was a new father but had the added worry of everything that was happening with me. Thankfully, we had great support at home from close family and friends.”
Claire was prescribed heart failure medication in hospital and thankfully responded well but there was a downside. “Before starting treatment, I was asked if I intended to breastfeed Aoibhe. Unfortunately, some of the medications they planned to treat me with were not suitable while breastfeeding. I decided the most important thing was to get better so really this decision was taken out of my hands and we fed Aoibhe on formula milk.”
“My ejection fraction when I was first admitted to hospital was just 18% and after about ten days on the medication, it went up to 34%. I had an MRI last November which showed it was back up to the early 40s. I have come from severe heart failure to mild/moderate so there have been positive steps forward which is reassuring. I am thankful I am responding to the four pillars of heart failure medication and am moving in the right direction from when I first got my diagnosis.”
“I was also advised to stay under the care of the Belfast Health and Social Care Trust because the heart failure waiting list within the Northern Trust is so long. This has meant I have had to attend clinics in Belfast since I got out of hospital which isn’t ideal, but on the other hand I am glad to be getting the care I am as other people aren’t in the same position.”
Even with treatment, Claire still battles the side effects of her heart failure every day as she explains; “I still feel breathless when I'm doing simple things like lifting Aoibhe. I can be doing some light tidying up after her, just putting toys away for example, and I will be out of breath. Even standing for any length of time tires me. I am really fatigued, and I need to sleep a lot. Heart failure has a massive impact on me and what I am able to do on a daily basis. Beforehand I was such a busy person, and I loved to make plans and socialise, so it has been very hard for me to adjust to this new way of life. It has also meant I haven’t been able to return to work, but I am hoping to in the future. I’m a P2 teacher so I need to be fit and able to return to the classroom.”
“The mental impact is also massive. I sometimes get ectopic heartbeats, an irregular heartbeat, and think, ‘is my heart going to stop?’. I am always anxious about it. People also say things like, ‘you look great’. Yes, I can put on my makeup and do my hair, but people don’t know what is going on inside me and how I feel about having heart failure. But I battle on.”
Claire is supporting Northern Ireland Chest Heart & Stroke’s heart failure campaign to spread awareness of the condition and its signs. “I want people to be aware of the symptoms of heart failure and the fact it can affect anyone at any age. When I was told I had it I thought ‘no, people my age don’t get heart failure, that’s people who are elderly’. It was a huge shock as I was only 39. I would say to people, please get things checked out if you are experiencing any breathlessness, exhaustion, or swollen ankles. These could be signs of heart failure and detecting it as soon as possible is crucial.”
Claire concludes; “I’m so grateful my heart failure was caught. As long as my medication continues to work and keeps me here that’s my main concern at this stage. I’ve been told I’m doing well and I’m thankful for that. I’ve got my beautiful wee girl and my husband. We’ve come a long way since last year and I just want to keep moving forward.”
Find out more about heart failure and how we can support you and your family.
