Nov 18th 2020 - Webinars for parents of children with heart conditions
Supporting your child coming into hospital. 23rd November 2020, 11am. Managing impact of a having a child with a heart condition, for parents. 30th November 2020, 1pm. Supporting siblings of a child with a heart condition. 7th December 2020, 11am
Nov 12nd 2020 - Updated information from BCCA and RCPCH in light of new lockdown.
The BCCA (British Congenital Cardiac Association) have updated their guidance for patients, parents, charities and support groups in light of the national lockdown for England. They can be read here. This advice is that those in the clinically extremely vulnerable group no longer need to follow previous shielding advice. Guidance advises attending school and returning […]
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 […]
Sep 02nd 2020 - British Congenital Cardiac Association – update on returning to work and education
The BCCA has provided an update on returning to education for children with heart conditions. It can be read here. Helpful links: RCPCH talking to families British Heart Foundation children returning to school RCPCH shielding and education
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 24th 2020 - CHF COVID-19 and beyond
CHF has continued to support children with heart conditions and their families during the pandemic and are making plans for the future. Read about what we have been doing here.
Aug 13rd 2020 - Can you help us improve the quality of services for congenital heart disease?
The Children’s Heart Federation are involved in a new study called CHAMPION to try to improve how the quality of services for congenital heart disease (CHD) is measured and reported in England. We want to hear your views on what makes services good quality, which includes understanding how COVID-19 has affected your experience of health […]
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. […]
Jul 21st 2020 - Miley’s story
Told by her mother Natalie We had been waiting for the birth of our daughter Miley for years. We had fertility treatment to help conceive her and we were so excited to meet her. I had no complications in my pregnancy and we were told at the scans that the baby was healthy. However, at […]
Jun 18th 2020 - Feeding toddlers with heart conditions
Children with heart conditions are often reluctant eaters so need to get the most out of everything they eat and drink. This book is written by paediatric dietician Luise Marino specifically to help with feeding children with medical conditions. It contains recipes and practical advice about feeding a child with a medical condition. If you […]
