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.

Oct 05th 2023 - Lacie’s story

Lacie’s story told by her mother Kayleigh  At my twenty-week pregnancy scan I was told that Lacie’s heart hadn’t formed properly, this was a terrible shock but it gave me time to prepare for her arrival with the knowledge that she would probably need surgery in order to survive.  Lacie was born early after exactly […]

Mar 28th 2023 - Lincoln’s Story

Told by his mother Tanya  My youngest son has a complex Congenital Heart Defect (CHD) and Heterotaxy Syndrome RAI meaning he has misplaced organs and no spleen, basically he has a complex anatomy. We found out at the anatomy scan that there was something wrong with his heart. He had his first surgery at 4 […]

Sep 05th 2022 - Michael’s story

Told by his mother Johanna After a number of antenatal growth scans Michael was deemed small, so an induction was booked at 39 weeks. Everything went well with my induction and before the evening came I was holding my second son. In the evening, on the maternity ward, I mentioned to a midwife that Michael […]

May 25th 2022 - Dominic’s story – told by Dominic

Dominic Davies aged 21 tells the story of his heart condition, his heart transplant and why he supports the law change relating to organ donation Hearing that there’s something very wrong with your baby’s heart must be terrifying. That’s what my mum was told at her routine scan when she was 20 weeks pregnant with […]

May 19th 2022 - Lilly’s story

Lilly’s story told by her mother Kirsty Lilly’s heart was stable when she was born so was born in September 2020 and she was discharged by the Friday of that same week. Lilly has a very rare heart condition called dextrocardia where the heart is on the right hand side of the chest rather than […]

Sep 23rd 2021 - Louie’s story

Told by his mother Charlene My partner and I found out at my 24-week scan that the baby I was carrying had a heart condition, this was missed at the 20-week check-up but once detected I had lots of scans so the medical team could be prepared. Louie was born at St Michael’s hospital in […]

Aug 27th 2021 - Maisie’s story

Told by her mother Louise We found out that our baby was going to be born with a heart condition during a scan at 16 weeks and it was confirmed at 20 weeks that the condition was Tetralogy of Fallot. Our beautiful girl Maisie was born on 7th December 2020 and she was absolutely perfect. […]

Oct 19th 2020 - Sophia’s story

Told by her mother Tas On the 22 February 2016 I was absolutely delighted to hold Sophia in my arms for the first time.  Apart from slight jaundice and not feeding much and being very sleepy, she was perfect, she was my 3rd child and weighing 9lb, also the heaviest.  I was told babies are […]

Aug 26th 2020 - Hope’s story

Told by her mother Caroline Hope was born on the 24th January 2020 with Trisomy 21. This brings with it a list of possible medical issues, including heart defects and so she was given many scans at a just a day old. The scans revealed that Hope had a partial ASD and it was left to hopefully […]

Aug 03rd 2020 - Rowan’s story

Told by his mother Kerry When my son Rowan was one week old I noticed he looked a little blue around the edges, was breathing heavily and his fingernails had turned purple. We went straight to A&E because he was so young and small. My husband wasn’t allowed to accompany us because of coronavirus restrictions.  […]

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