Good things come in small packages for more than 100 young heart patients who have portable machines that can test their blood at home.
Thanks to a project led by the Auckland District Health Board and the support group Heart Children NZ Inc., 104 children around the country now have home test machines that let them measure their blood clotting rates at home and phone the result to their doctor who adjusts their blood-thinning medication.
Project leader Heather Spinetto says before the INR (International Normalising Ratio) home testing machines were available, children had a standard blood test with a needle inserted into a vein every two weeks. The new test requires one drop of blood from a finger prick. "Younger and younger children are going home after surgery needing anti-coagulant medication for the rest of their lives, the youngest child so far is seven months old."
Five-year-old Germain White of Hatfields Beach was one of the first children to take home one of the machines. He underwent valve replacement surgery at aged one year and will be on blood-thinning medication for the rest of his life. His mother Theresa says the home testing machine has made a huge difference. "Everything doesn't have to revolve around having to go to hospital."
The family used to take Germain to hospital every two weeks for fingerprick tests to spare him the ordeal of regular blood tests. Now, the tests are taken care of at home, says Theresa. "Whatever the result is we just ring the hospital and they register it in the computer and tell us what adjustments to make to his medicine."
Until 2000 hospitals and laboratories had been responsible for the tests, then parents discovered the fingerprick machines overseas and asked why they could not have them too. The parents' question prompted the INR project. The ADHB laboratories tested the machines for accuracy, and compared the results with the standard laboratory tests. Then a system was planned that included processes for training parents about the medication and how to use the machine for the test, managing quality control issues for the machine and the results gained, and minimizing the risks involved.
Heart Children NZ fund the $1200 machines, while training is provided by the ADHB staff as part of discharge planning. Any child who has a heart condition and is on anticoagulant medication is eligible for one of these machines. Most machines have gone to children who've had valve replacements, or surgery to correct congenital heart defects.
In some cases the machines had improved patient care because the convenience had removed the temptation to put off blood tests.
The feedback's been heartening. "Initially it's really, really hard. After a while even the little two-year-old understands they get a finger prick but after that there's no more pain. After a few weeks children adjust. One child calls it her prickle machine."
Heather recalls an email from a boy who recently went camping for the first time in his life thanks to the portable machine. "It has changed and increased the quality of the children's' lives and it has given them more participation in their treatment and some control of their situation."
