We all feel the cold but poor circulation (movement of blood around the body) and an inability to exercise to keep warm cause problems for many children with a single ventricle heart condition. Often their feet and hands feel like ice and their lips go blue very quickly when the weather is cold.

So what ideas are there out there that might help?

What to wear

Pile on the clothes: lots of thinner layers are better than one thick one as they trap and warm air.

Go back to buying vests; lots of shops have good thermal ones for children.

Put tights on under trousers and put socks on top. Yes even on the boys – Batman wears tights!

Find a hat with earflaps and nice thermal gloves. Try the local ski shop, they have gear especially designed for very cold weather.

Cover those noses: remember scarves or balaclavas can help keep those noses warm.

Keep up the calorie intake

We all use up calories keeping warm so it is extremely important to make sure that children and young adults eat plenty of calorie-rich food so that they keep warm and keep growing.

Food ideas

Warm up from the inside – have hot cereal for breakfast, warm the morning drink of milk.

Make hot chocolate or tea for snack time. Have soup with a sandwich for lunch and plan warm snacks throughout the day.

Remember that your children need little and often so you’ll be helping their diet and keeping them warm.

Keeping warm at night

Children with congenital heart disease have poor circulation that is often at its worst at night. Blood is not being pushed as efficiently around the body when the child is asleep in one position. This can cause the legs and arms to become very cold at night and can cause leg pains.

Snug in the bed all-in-one nightclothes with extra socks can help when the duvet slips. If it’s really cold, think about using a sleeping bag. Onesies are really in at the moment so all of the children can feel fashionable, even the teenagers.

Use hot water bottles or heated blankets to take the chill off the bed before a child gets in but be careful if you are going to leave them there all night as the bed can overheat and the child could burn themselves.

If the children wake with leg pains give them Paracetamol, if the doctors are happy for it to be used, and massage their legs. If leg pains happen often always tell the medical team when you next go to clinic.

Heating bills

Many LHM families worry about keeping the heating on because the price of gas and electricity is very high at the moment. Find out if there are any ways you can be more energy efficient at home through one of the sources of advice below. If you are on a low income, there may be other support available, but check the eligibility carefully.

Energy Saving Trust

The website includes lots of useful information including grants and advice. The site has separate sections for England, Wales, Scotland and Northern Ireland. Links and helpline details are available throughout the site.

www.energysavingtrust.org.uk

The Trust also offers independent expert advice on saving energy at home through their Energy Saving Advice Service, tel 0300 123 1234 (advice is free, telephone call is national rate).

Cold Weather Payments

May offer help with heating costs if you are on income support and have a child who has a disability.

www.gov.uk/cold-weather-payment

Warm Home Discount Scheme

Primarily aimed at pensioners with a low income, but there may be eligibility for other vulnerable people with low incomes – contact your supplier directly to find out if they can help.

Tel: 0345 603 9439
www.gov.uk/the-warm-home-discount-scheme

Feeling ill

Lots of children come into contact with colds, coughs, sore throats and flu over the winter months. It is impossible for them to keep away from all infections and like every other child they have to build up their immunity where they can. As parents of children with half a working heart it is much more important that you seek a bit of medical advice. If a runny nose persists, or a cough or a sore throat does not get better in a couple of days go and talk to your health visitor or the GP. It may be a viral infection which just needs to be kept an eye on but it may need antibiotics to help it clear up.

Simple things can help prevent a cold, including keeping a child well wrapped up against the cold weather. Vaseline on the lips to stop them getting sore and lots of warm drinks and nourishing food all goes to help keep them well during the cold weather.

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