Heart hero Henley – keeping cheerful as he waits for life changing medical equipment

Six-year-old Henley from Rotherham has a serious heart condition, he has had several operations and will take anti-coagulant medication for the rest of his life.

For the last three years Henley has been home tested using an INR* machine provided by the Children’s Heart Federation (CHF). His mother Danielle was trained to do the testing by the hospital staff. Before that Henley and Danielle had to travel to the hospital weekly, on a good day this would take three and a half hours on the worst day six and a half (an hour and a half travelling).

Unfortunately, just before the coronavirus took hold in the UK the machine stopped working so Henley’s haematology nurse applied to CHF for another machine

During the pandemic the demand for INR machines has risen dramatically as vulnerable children like Henley need to ensure that their blood clotting levels are regulated but also need to stay away from hospital if possible. This valuable equipment is needed more than ever.

CHF has started a fundraising campaign to raise money to purchase machines for children like Henley so they can be tested safely at home.

The coronavirus has closed schools, and everyone is encouraged to postpone hospital visits or access medical advice remotely. This is impossible for children on blood thinning medication who need to have their coagulation (clotting) levels checked regularly.

CHF wants to provide more INR machines for children on blood-thinning medication such as Warfarin during these difficult times.

Being able to home test would remove children like Henley from risk of infection or of infecting others. And when school starts again these children will not have to miss even more of their education going on trips to the hospital.

Henley’s mother Danielle explains how important an INR machine is for Henley.

“Henley has a complex cardiac condition which requires INR testing weekly.

“Henley's condition requires him to social distance and he's currently unable to leave our home to ensure he is safe. “We live ten miles from our children's hospital where testing takes place, so even in “normal” times having an INR machine is very important.

“Home testing is a huge help; it means Henley can remain in school having tested at home and not miss out on his education. It gives peace of mind, if Henley were to have an injury (a knock or a fall) testing can be done immediately to ensure his clotting levels are safe, reducing unnecessary hospital visits.”

Henley is keeping cheerful during lockdown, spending time in the hot tub and doing craft projects. He made this little video about the coronavirus and the importance of hand washing.