Joseph’s Story

Joseph’s heart condition wasn’t diagnosed until he was one month old and he tragically passed away after his second open heart surgery. His devastated mum, Molly, shares their heart-breaking story:

Joseph Matthew was born on the 3rd July 2021. The most beautiful baby inside and out. An absolute dream.

When he was four weeks old, his breathing became very heavy, he was weak and pale, and it got to the point where he wasn’t feeding at all. When he was exactly one month old, on the 3rd August 2021, I called 111 who told us to take him to A&E.

There, he was diagnosed with bronchiolitis. After a couple of days of stabilisation but no change, they brought over a cardioechogram sonographer to check his heart wasn’t causing his symptoms. They discovered he had aortic stenosis (a narrowed valve) and he needed emergency open heart surgery to fix it.

We were rushed to a larger hospital by ambulance that night. The next day, the 6th August, Joseph underwent surgery, which thankfully went very well. After a few weeks in hospital, he was as right as rain and we were sent home. All was well and he had regular check-ups and echocardiograms.

Eventually, his medical team noticed the valve starting to narrow again, which they had said would happen. When he was ten months old, Joseph needed another open heart surgery to replace the valve, and then he wouldn’t need any other intervention until possibly adolescence.

He was in theatre for a very long time, but after about 12 hours we finally got the call to say all was well. He came out of theatre and onto PICU. I went to bed that night relieved, but received a call at 2:30am to come back over to the hospital. They wouldn’t tell me what was wrong. I’d never felt fear like it in my life.

I ran over and doctors told me Joseph had had a cardiac arrest out of nowhere, and they were doing CPR. Eventually they managed to stabilise him and he was put onto the ECMO (life support) machine. The next day, he had hourly observations, and they thought he was improving. However, his pupils had dilated, so they rushed him down to have a CT scan, suspecting a bleed on the brain.

The scan showed that, due to the lack of oxygen during the cardiac arrest, Joseph had suffered severe brain damage. We were told he wouldn’t survive. After the relevant tests, doctors confirmed Joseph was brain dead and had officially died. This is the moment my world was shattered to pieces and I can’t unlive it.

Joseph’s heart was being kept beating by the ECMO machine pumping blood round his body. The next day, the 1st June 2022, doctors pronounced him dead and switched it off. This was the most harrowing moment of my life, watching the colour drain from my son’s body and him fading away before my eyes. I held him and said goodbye.

I wouldn’t wish this on my worst enemy and it’s something that will stay with me forever. No parent should have to go through this. Ever.

Joseph was my entire world, my best friend. I couldn’t have been blessed with a more joyful, beautiful baby boy. He was and is my everything.

I will never stop advocating for the work Tiny Tickers do. Had pulse oximetry machines been available when he was born or his heart condition diagnosed before he was born, my son would possibly still be with me now.

I hope by sharing Joseph’s story it raises awareness of congenital heart disease (CHD) and the important work of Tiny Tickers, saving the lives of beautiful heart babies like Joseph.

1000 babies leave UK hospitals every year with no-one knowing they have a serious heart condition. Tiny Tickers is working hard to change this by placing potentially life-saving pulse oximetry machines in maternity wards, training sonographers to spot heart defects at pregnancy scans and spreading awareness of the key signs a newborn baby may have a heart condition.

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