Children with hemophilia often have a port (port-a-cath or mediport) implanted in them when they are very young so parents or care providers can easily infuse factor concentrate and draw necessary blood samples. Young children often have small veins that are difficult to locate and give factor through. As parents, we know it is difficult for parents and caregivers to have to "poke" a child multiple times to administer the necessary clotting medicine. The port eliminates the need to directly access ("poke") a vein because the port assures access into a child’s blood vessel system.

How long do ports last?

Ports are a great benefit for children with hemophilia, but they do not last forever. How long a port lasts is different for everyone. The usual lifespan of a port is three to five years, although there are some patients who have kept ports in without problems for more than 10 years.

What causes ports to stop working?

There are many reasons ports stop working. The most common is infection. If a child develops an infection in their port that cannot be cleared with antibiotics, the port must be removed. The port itself is still working, but the risk of the infection throughout the body that could result in hospitalization or even death is too great to leave an infected port in place. Ports also malfunction – they can come apart or come out of the vein. The fluid/factor infused would then go into the tissue surrounding the port and be of no use to the patient.

Clots can clog a port and prevent it from working. This sounds like an odd complication for someone with a bleeding disorder, but it is not as uncommon as you may think. A child who is on prophylaxis and regularly gets factor can develop clots just like anyone else. These clots may be in the port, the catheter or in the vein at the end of the catheter.

If the port is not being accessed on a regular basis and flushed per the treatment center’s protocol or instructions, it can also clot off and stop working.

If my child’s port stops working can’t they just get another one?

The answer to this question is not simple and must be made with parents, the child if he or she is old enough to understand, the physician and treatment center team. Replacing the port can be considered for an infant or toddler who does not have good arm and hand veins.

Changing to venipuncture (using a vein) should be considered for children who:

• Have developed veins in their arms and hands that a parent or the child can be taught to "stick"
• Are cooperative and can sit still while the factor is being infused through a vein
• Have support available to make this transition a success

Because everyone’s circumstances are different, deciding whether to replace a port is an individual decision that will need to be made with your treatment care team.

Can we transition to venipuncture before the port fails?

Yes, the ideal time to begin the transition process is while your child still has a functioning port that can be used as back-up in case you miss a vein. When you think you and your child are ready to begin venipuncture (using a vein), contact your treatment center nurse and he or she will set up a teaching plan to begin the process of home infusion using venipuncture. The teaching will vary from center to center, according to their policies.

To transition

• Contact your treatment center when you think you are ready to start. Your nurse coordinator may bring this subject up during a comprehensive visit or may approach the subject with your child at camp.
• The nurse will work with you to identify veins that might be used, review the process of venipuncture with you and your child, and set up a teaching schedule.

Keep in mind this is a process, just like when you learned to access your child’s port. Don’t expect it to happen overnight. Thinking ahead and planning are the keys to success. Please contact your hemophilia nurse coordinator and she/he will guide you through this process.