Learning about Subcutaneous Infusion Ports

This morning we met with a pediatric surgeon for a consultation on ports. We set this up a few weeks ago after discussions with our HTC (Hemophilia Treatment Center) team about starting regular prophylaxis to prevent a recurrence of our son’s knee bleed.

Since then, we’ve had three prophylactic infusions, two of which went well and one went abysmally. Our little boy has a nice coating of baby fat and apparently his veins are pretty difficult to access.

The surgeon was very knowledgeable and gave us a rundown of the benefits (less stressful for everyone, easier to give him treatments whenever he needs them, easier to get blood samples) and the disadvantages (risk of surgery, risk of infection so we’ll need to get blood work every time he gets a fever, a permanent scar, plastic object under his skin, possibility the catheter will tangle, risk of blood clots). He told us to email him anytime so I intend on following up on a couple of medical questions including the decision of subclavian or jugular vein and the choice of medical device.

We would probably be willing to keep trying with intravenous infusions but our hemophilia team told us that there may be a larger risk of inhibitors for children who have difficulty with infusions, possibly due to trauma from multiple needle sticks leading to a reaction of the immune system against the factor that it detects around the area of the injury. This correlation seems to be based more on observation than scientific study but it’s enough to tip the balance toward a port.

And if we’re going to do a port, there is no sense in delay, so we’ve decided to schedule it right away.