Weighing the Pros and Cons of an Implanted Port for My Young Son

I can remember my 4-year-old son’s first surgery like it was yesterday. Cayden was just shy of 2 months old when I watched the anesthesia team wheel away my tiny baby. It was the first of many surgeries for him, but also one of the hardest.

We opted to have a port implanted in Cayden, as it was the best option at the time. A port is a small device that is surgically inserted under the skin, typically in the chest area. It can be used for blood draws and delivering IV fluids and medications. It’s not typically placed in a child at such a young age, but Cayden was a particular case.

Due to his infantile-onset Pompe disease, Cayden must receive enzyme replacement infusions to stay alive. Without these treatments, he wouldn’t have made it to his first or second birthday. Luckily, doctors caught Cayden’s disease early thanks to newborn screening. However, as soon as he was diagnosed, doctors told us he had to start the infusions immediately.

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Cayden has very small and deep veins, making IV access hard for him. I couldn’t stand to see my child getting poked and prodded with needles in an effort to find an accessible vein. Because it is so hard to get IV access to him, his doctors discussed the option of an implanted port. I was a little hesitant at first, but after a few long discussions with the doctors, I realized it could be a good plan.

Having a port can be challenging, though. For starters, placing one requires surgery. It’s never easy for a parent to watch their child go through something like that. Most of the surgeons at our children’s hospital didn’t feel comfortable placing a port in such a young child. However, one brave surgeon took on the challenge and was successful. I remember being so grateful for his courage and confidence.

When Cayden awoke from surgery, he was inconsolable. He screamed and cried, and his heart rate was over 200 beats per minute, which is way too high for anyone! After a dose of narcotics, and with the pain under control, Cayden was able to relax and sleep. When he awoke again, he was in a much better mood and seemed to be experiencing only mild pain.

Another hard thing to deal with in terms of ports is fevers. Children typically experience fevers many times throughout their childhood. They might originate from things like teething or a common cold. However, when someone has a port, a fever can be alarming, as it might be one of the first signs of an infection in the port.

Anytime someone with a port has a fever, they must go to the hospital to get blood drawn from the port so that it can be cultured. If the culture grows any type of bacteria, antibiotics must be administered immediately. Thankfully, whenever Cayden had a fever, it wasn’t due to a port infection. But it can be a hassle going to the hospital for cultures just because of a fever.

Despite all of this, there are many benefits to having a port. It saves my son from having to be stuck multiple times for IV access. It also makes infusions a breeze for him. He knows that he just has to get his port accessed and then he’s good to play for a few hours without worrying about IV lines hanging from his arms or hands.

Overall, there are many pros and cons to an implanted port. In our case, it was one of the best things I could’ve done for my child. If you’re considering a port for your child, make sure to discuss it fully with your doctors and other members of your healthcare team.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.