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 contact 

Feb 07th 2024 - Imogen’s Story

told by Grandmother   We found out at the 20 weeks scan that Imogen had hypoplastic left heart syndrome which was devastating. Imogen was born on the 3rd August 2016 and was taken to the Freeman hospital after a couple of hours. She had her first open heart when she was 2 days old which […]

Feb 06th 2024 - Sam’s Story

told by mum   Samuel was born at full term after an uneventful pregnancy. We had had a quick discharge from hospital, so our GP visited us at home the following day and a full newborn examination did not reveal anything unusual. Samuel was very quiet, rarely cried and slept beautifully. My only complaint with […]

Feb 05th 2024 - Charlie’s Story

told by Charlie   Hi! I’m Charlie and I have Focal Atrial Tachycardia, a defect in my heart’s electrical system causing an irregular heartbeat. Untreated, my heart goes out of rhythm multiple times a day. It’s a very annoying (benign) condition. Having a quirky heart meant I learnt to work with my body. Professionally, I’ve […]

Feb 04th 2024 - Kodi’s Story

told by mum Lynsay   At 12 weeks of pregnancy I was told that the baby was very poorly and the fluid around the baby was too much and was pressing down on the baby’s chest and head, the hospital was advising me to terminate the pregnancy as by the time I got to the […]

Feb 03rd 2024 - Mary’s Story

told by mum Elizabeth   Before having a child with a hole in the heart, I never imagined the knock-on effects. Who would have thought that it would result in feeding her through a naso-gastric tube or that it might cause extreme reflux and, as a result, it took two people over an hour to […]

Feb 02nd 2024 - Jaxon’s Story

told by his mum Amanda   Jaxon is about to turn 7 next month on the 2nd of February, he was born with Ebsteins anomaly, we didn’t know until he was 6 hours old. At 4 days old Jaxon went into multi organ failure and he was given 24 hours to live. We were lucky […]

Feb 01st 2024 - Lilygrace’s Story

told by mum   At my 20 week scan, I was told by the sonographer that there was something wrong with my baby’s heart and we had to go back for further scans by cardiology and fetal medicine. They confirmed that my baby has the very rare Heterotaxy syndrome right atrial isomerism (two right atria, […]

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 […]

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