This week is CHD Awareness Week – Parents please read…

Someone very close to our hearts was diagnosed 18 months ago with CHD, just a few months after being born this brave little fighter had to undergo heart surgery for a condition that needs much more awareness. Thanks to the amazing team at Alder Hey Children’s Hospital our little mate is now about to celebrate his second birthday, happy and healthy.

Nearly 1 in every 100 newborns are diagnosed with Congenital Heart Disease – but what is it? How can you as a parent or loved one spot the signs? And what treatment is available?

This week is CHD Awareness Week and we beg you as a parent to read on. We caught up with Anne Keatley-Clarke who is Chief Executive of the Children’s Heart Federation to find out more.

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What is CHD?

Congenital heart disease occurs  when the normal development of the heart is disrupted – most often during week of pregnancy. In most cases there is no obvious cause for the disruption.

Who is affected, and how many people have the condition?

Congenital heart defects are the most common birth defects. Nearly one of every 100 babies is born with a CHD. In the UK, each year, 5000 babies are born with the condition and a further 1000 acquire a heart condition.

One very scary thought for many parents is the thought of their child having the condition, what advice would you give to new parents for spotting signs of CHD?

CHF is running ThinkHEART, a national information campaign directed towards parents and medical professionals which aims to empower and inform parents, as well as better educate medical professionals about the key early signs of a possible heart problem in children.

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)

We presume it’s more difficult to spot signs in new borns?

All new born babies have the Newborn and Infant Physical Examination (NIPE) shortly after birth and prior to discharge from hospital, if they were born in hospital.

This examination includes specific screening tests to find out if the baby has any problems with their eyes, heart, hips and, in boys, the testicles (testes).

CHF is campaigning for pulse oximetry testing to be part of this examination – a non-invasive test that measures the oxygen level in the babies.

What treatment is available and can these defects be cured?

Treatment for congenital heart disease depends on the specific defect that the child has.

Mild heart defects don’t usually need to be treated, although it’s likely that they’ll have regular check-ups to monitor their heart.

More severe heart defects usually require surgery and long-term monitoring of the heart throughout adult life by a congenital heart disease specialist.

In some cases, medications may be used to relieve symptoms or stabilise the condition before and/or after surgery

Treatment for congenital heart disease depends on the specific defect that the child has.

Will we ever be able to cure CHD?

Doctors able able to diagnose and treat many different types of congenital heart disease.

Fifty years ago, around 80% of children born with a serious heart condition died before their first birthday. Today, thanks to advances in treatment and care, more than eight out of ten babies with congenital heart disease grow up to be adults.

Nationally and internationally, there is ongoing research  into the understanding, diagnosis and treatment of congenital heart disease.

Tell us about what has been happening this week and the work you do at The Children’s Heart Federation?

CHF is, with support from MPs and the AllParty Heart Group, is promoting the ThinkHeart Campaign.

CHF  is also running the ‘You, me help CHD’ campaign, see https://www.chfed.org.uk/you-me-help-chd/

Where can people find out more information, and what help is out there if people are worried?

Go to CHF’s  website: www.chfed.org.uk for information or you can call our information line 0808 808 5000.