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.

Sep 04th 2019 - Lily’s story

Told by her mother Katie In April 2015 we found out we were expecting our second child and we were obviously thrilled to bits. The pregnancy progressed normally until I had my 20 week scan, the sonographer found a problem with our baby’s heart and referred us to a consultant at our local hospital. 48 […]

Sep 04th 2019 - Hugo’s story

Told by his mother Julia Hugo was born in 2012 in poor condition with intrauterine growth restriction  (IUGR) and antenatally diagnosed Transposition of the Great Arteries. The first 24 hours were very stormy, he was stabilised after an urgent balloon septostomy at four hours old and went on to have a switch at ten days. […]

May 21st 2019 - Poppy’s story

Told by her mother Krystal My daughter Poppy was a fast delivery and was born in the car at the hospital car park. We were concerned because she was a blue shade in colour but the midwives assured us that this was because she was born outside and was probably cold. A junior doctor examined […]

Jan 15th 2019 - Myles’ story

Told by his mother Charlotte When I found out I was pregnant we were so happy, but I suffered a big bleed at eight weeks and again at 16 weeks into my pregnancy. All then went well until my 20-week scan. I was told I was having another boy and was so happy but then […]

Nov 12nd 2018 - Eleanor’s story

Told by her mother Helen. “Eleanor was born in August 2012 following a normal pregnancy and birth so mother and daughter were discharged from hospital later that day.  At four days old, Eleanor was seen by a GP who undertook  tests to check normal functions.  It was at this point that we were told to […]

Nov 12nd 2018 - Gabby’s story

Told by her mother Maria. “Gabby was born in December 2010. The day after her birth following regular checks we were advised that they had picked up a murmur and believed that it was likely to be caused by a hole in the heart that would probably close after time. We were told that Gabby […]

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 […]

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