HTLV Testing for Cord Blood Donation

 

Who is this information for?

This is for parents, thinking about donating their baby's cord blood, who have not been tested for HTLV infection.

Cord donation is a valuable and potentially lifesaving gift.

We want you to know what HTLV testing for cord blood donation involves as the test is not a part of routine pregnancy checks.

 

What is HTLV?

HTLV stands for Human T-Lymphotropic Virus. It's a tiny germ that has existed for thousands of years. You can catch it through unprotected sex, as a baby during pregnancy or breastfeeding, or from sharing infected needles or unscreened blood. But don’t worry—it cannot be spread by casual contact.

A simple blood test can detect this infection, and this test can be done by your GP or at our clinic.

 

How common is HTLV?

HTLV is uncommon. In the UK, about 36,000 people carry this infection. Among pregnant women, only 5 in every 10,000 test positive.

 

What does HTLV do?

Most people (90%) don’t show any symptoms and may not even know they have it. However, if they don’t know, they can unknowingly pass it on to others.

A small number of people develop serious health problems like blood cancer or difficulty walking. Finding the infection early means doctors can help manage it better.

 

Why should I get tested?

HTLV can be passed to babies during pregnancy or breastfeeding and this can be prevented. Knowing if you have it before your baby arrives helps doctors make the best plan to protect your child.

Right now, cord blood donors are tested as part of the cord blood donation programme, but only at the time of delivery and results may take some time to become available.  This means that you might find out whilst you have begun breastfeeding. This can be stressful! Testing earlier in pregnancy—or even before—will help doctors prevent infection of your baby.

 

What if my test is positive?

If you test positive for HTLV:

• We will call you to explain more about HTLV.

• We will talk about the risks and benefits of breastfeeding your baby. Breastfeeding is one way in which the infection is passed to babies. Avoiding breastfeeding reduces this risk. In some cases, carefully monitored breastfeeding is safe.

• We will invite you to our London clinic to check HTLV levels in your blood. If you decide to breastfeed we can check the virus levels in your breastmilk.

• Your baby will have a blood test at 18 months to see if they carry the infection.

• Unfortunately, your donated cord blood cannot be used for transplants because the virus can be passed on through blood.

 

What should I do next?

Contact our clinic to learn more about testing for HTLV.

 

Want more information?

We’d love to hear from you!

Email: imperial.htlv@nhs.net Phone: 020 3312 1521