Every year, around 5,000 babies are born with Congenital Heart Disease.
Only a third, however, are detected before birth, meaning that babies with harmful but treatable conditions are discharged from hospital without being diagnosed.
Recently I was pleased to support the Children’s Heart Federation (CHF) at an event in the House of Commons.
The CHF is the UK’s leading children’s heart charity and an umbrella organisation for 21 member groups which support heart children and their families.
Delays in diagnosis can cause distress, physical harm and even be life-risking for these babies, and one of most important parts of the Federation’s work is to raise awareness of the importance of testing all babies at birth for heart conditions.
I urge parents across Crawley to look out for the five Think HEART signs to help identify a possible heart condition early.
Think HEART provides parents with five easy signs to help to spot a heart problem:
H – Heart Rate. (Is their heart rate too fast or too slow? Normal rate is between 100 to 160 beats per minute.)
E – Energy. (Are they sleepy, quiet and too tired to feed?)
A – Appearance. (Is your baby a pale, waxy, dusky, blue or grey colour?)
R – Respiration. (Are they breathing too fast or too slow? Normal rate is between 40 to 60 breaths per minute.)
T – Temperature. (Are they cold to touch? Particularly their hands and feet.)
The CHF supports families by providing information and advice, such as their telephone helpline, publications, and website. They also provide specialist medical equipment, give out small grants to help families meet unexpected costs, and organise trips that bring families together for mutual support and respite from the daily strains of life with a heart condition.
The Children’s Heart Federation drives and supports research in the UK and across Europe into better care and treatment for children with heart conditions.
They provide crucial administrative processes, patient involvement and expertise. They are also partners in the ground-breaking LENA project, creating mini-tablets for newborns, working with partners across the continent.
The Federation works in partnership with other organisations to help develop policy, and to campaign on issues that affect families of children with a heart condition.
Additionally, they consult with families through meetings and surveys, to understand their priorities for services, and provide regular briefings on issues of interest to carers of a child with a heart problem.
For more information on the Children’s Heart Federation, please visit: www.chfed.org.uk.
If you would like to speak to someone at the CHF, please call 020 7422 0630, or phone their free Infoline: 0808 808 5000.