Living with an inherited heart condition in the family

When her son became unwell on his 16th birthday, Inderdeep Birk never expected to discover an inherited heart condition that would change life for the whole family. She tells us her story.

Inderdeep Birk with her sons Maninder and Manvir

Inderdeep with her sons Maninder, left, and Manvir, right

To discover I had passed down a gene for a heart condition I didn’t know I had was devastating. I couldn’t believe it when I heard the words: ‘You’re the carrier.’

We found out after Maninder (my son from my first marriage) became unwell on his 16th birthday. He had played rugby at school and spent the day with friends celebrating his birthday. When he came back to our home in Hounslow that evening he said he felt heavy in the chest. I gave him indigestion tablets and he went to bed.

Around midnight he came into our bedroom and said he didn’t feel good at all. While he was talking to me he said he had no energy and just dropped onto the bed. I took him straight to A&E and stayed with him overnight, surrounded by heart monitors. He was so scared.

Dealing with diagnosis

In the morning, the doctor came and spoke with my husband Balwinder and me. She said Maninder had a heart condition called hypertrophic cardiomyopathy, but they didn’t know the severity yet.

We were transferred to the Royal Brompton Hospital under the care of Dr Sanjay Prasad. He told us that Maninder’s condition could be looked after with a low dose of beta blockers and regular check-ups.

Very quickly, I started to experience symptoms. I was breathless and had problems climbing the stairs

But then came the biggest blow. Dr Prasad told Maninder he was going to have to make big changes. Sports like rugby were too risky now – he would have to stop playing. This devastated him. Within days he had gone from being asked to join Bath University’s rugby team, to being told not to lift heavy objects or run for a bus. He was so angry and just kept saying: ‘Why me?’

Dr Prasad also told us about HCM being an inherited condition. I was given a blood test and it confirmed I was the carrier of the faulty gene. I was devastated when we found out my younger son Manny had it too. Very quickly, I started to experience symptoms. I was breathless and had problems climbing the stairs. Some mornings I was so dizzy I couldn’t get out of bed.

In 2011, Dr Prasad reviewed me. He put me on medication and told me I would need an ICD, which also has a pacemaker function.

After these treatments I felt better straight away, but soon the dizziness returned and I became bed-bound.

The Birk family - L-R: Manvir, Inderdeep, Balwinder and Maninder

Inderdeep with her sons, and husband Balwinder.

Having a heart transplant

In September 2017 I was put on the urgent heart transplant list. This came as a complete shock. But I was told everything was in my favour, as my other organs are healthy.

My sons told me: ‘We don’t just want you for the short term, mum. We want you for the long term.’ I am blessed to have such a supportive family

I knew this was my only chance, but before I made the decision, I sat down with Balwinder and my two boys to talk honestly about how they felt. It has been a lot to digest, but my sons told me: ‘We don’t just want you for the short term, mum. We want you for the long term.’ I am blessed to have such a supportive family.

I didn’t have to wait for long – I had a heart transplant on 4 October. The doctors said my new heart was slow to start, and my recovery has been slow too. Each day I am feeling better and getting stronger. I am remaining very hopeful.

Research into hypertropic cardiomyopathy

Hypertrophic cardiomyopathy, or HCM, is an inherited condition that can cause the heart muscle to thicken and become stiff, making it harder for it to pump blood. BHF researcher

Professor Hugh Watkins led the way in finding faulty genes that can cause HCM. With these findings he helped launch a groundbreaking genetic testing service. Once someone is diagnosed with HCM, they are tested to identify the specific faulty gene. Then their family members are tested, so they can be identified and treated earlier. We’re working to make sure this happens all around the UK.

Despite this progress, there is still no cure for HCM. BHF-funded researchers like Professor Watkins and Professor Mathias Gautel are working to develop drugs and treatments.

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