Your Stories

Welcome to the Children’s Heart Federation Personal Stories page.  Here you can keep up to date with stories involving the stars who support CHF and the families that use our services. Please be advised that some case studies may touch on very sensitive issues and express views that may not necessarily be shared by other parents or by CHF, nevertheless we value comments and thank everyone willing to share for their honesty. If you'd like to tell us your story click here to find out more.

Aug 29th 2018 - Molly’s story

Molly was born on 15 December 2001 with Truncus Arteriosus type one with a ventricular septal defect (VSD) and an atrial septal defect (ASD), she had open heart surgery at three weeks old in January 2002. When Molly got older around the time she was about to start primary school, she began to question her mother Ita about her scars.  Molly’s questions and the difficulty Ita had trying to explain […]

Aug 29th 2018 - Dominic’s story

Told by his mother Fran. The twenty week scan. A chance to see our miraculous second baby, conceived naturally after years of treatment to have our first son. Our excitement soon faded, seeing the colour drain from the sonographer’s face as she told us she couldn’t find the baby’s heart. We then waited with bated […]

Feb 14th 2018 - Phoebe’s story

When Phoebe reached the age of eight weeks, she stopped breathing and had to be resuscitated, this happened again six weeks later and then gradually more frequently until it became a weekly occurrence. Phoebe would go floppy and lifeless for anything from ten seconds to two minutes. After numerous tests on Phoebes’s brain Phoebe was […]

Feb 13rd 2018 - Ava’s story

Ava was born on the 10th December 2015. We weren’t aware of Ava’s heart condition until she was rushed to hospital at just under one month old, she was very grey/blue in colour and breathless, she also had poor weight gain resulting from poor feeding and vomiting. We had taken her to the GP several […]

Jan 29th 2018 - James’s story

At ten weeks old James had a bad night crying continually, not the normal cry to be fed or changed, it was a constant whimper. After such a sleepless night he was asleep in his chair by 11.00 am. I fed him at midday but he was immediately sick, so I took his temperature, it […]

Jan 23rd 2018 - Indi’s story

Our daughter Indi was diagnosed with Tetralogy of Fallot, a Right Aortic Arch and MAPCAs – Multi aorto-pulmonary arteries. (A number of additional arteries come from the aorta and supply the lungs with blood). I had no awareness of CHD and Indi was surviving on SATs in the low 60s. The Doctor told us she […]

Sep 25th 2017 - Jade’s son’s story

Hello my name is Jade and I’m hoping that by sharing my son’s story I can help raise awareness of congenital heart conditions. Having had three children previously, when I went for my 20-week scan during my fourth pregnancy I was prepared for the procedure to take a while. However, while the sonographer was looking […]

Sep 19th 2017 - Scarlett’s Story

I gave birth to the most beautiful baby girl on the 12th September 2013. Scarlett showed no signs of illness growing up, only the occasional cough and cold. She was such a happy baby, and when she started walking, she loved playing and running around. Her favourite was toy story; she would have her Jessie […]

Oct 15th 2013 - Rocky’s Story

James was born on the 24th February 2011,  he was born with only one kidney which I thought was his only health complaint until the doctor who did the discharge check on him found a murmur.  Following this  he was rushed down to the Special Care Unit until he was transferred to Manchester Children’s Hospital […]

Oct 15th 2013 - Kaidon’s Story

I had a difficult birth with Kaidon, when he was born he needed oxygen. Only a few days later he was sent home with the doctors saying ‘all was fine’.  Kaidon wasn’t feeding properly and was still jaundiced, when I asked the midwife and health visitor what was wrong, they told me it was because […]

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