Preparing for a son’s surgery was easier because of his brother’s

My oldest's procedures because of Pompe disease helped limit my worries

Keara Engle avatar

by Keara Engle |

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Last week, my youngest son, Kyree, went in for surgery at only 9 months old. I was a nervous wreck as the date for the procedure got closer and closer. However, I’ve been down this road many times with my 5-year-old son, Cayden, who has Pompe disease. My experiences with him helped prepare me for what lay ahead for Kyree.

Cayden has had multiple surgeries. He was only 8 weeks old when he went to the operating room for the first time. They implanted a port in his chest so that he could receive his enzyme replacement infusions. They’re currently the only treatment option for Pompe, so I agreed to the surgery without hesitation.

The next surgery for Cayden was to place his gastrostomy tube (G-tube), but in the same procedure he got a Nissen fundoplication to help with his acid reflux. He was 6 months old when he went through all that. Afterward, he twice had procedures to have tubes placed in his ears, as well as bilateral hip flexor release surgery to loosen his hip tendons.

That’s a lot for anyone to go through, let alone a young child. Every time he went in for surgery, I was nervous that something might go wrong. Thankfully, Cayden has had some amazing surgeons, so everything has gone as planned.

When my son Kyree was born, we were told surgery could help address some genital issues. We were sent to a urologist, who presented us options for what we might do. After listening to all of them, we decided that surgery would be best.

Because it wasn’t urgent, we waited until Kyree was at least 6 months old to get it done. That gave us a free summer, so he was able to go to the pool a lot. Once summer was behind us, I started trying to get Kyree’s surgery scheduled.

As the weeks went by, I worried about whether I was making the right decision. I could’ve left things as they were, but if we didn’t get it fixed while he was a baby, the healing process would be much harder if he wanted the procedure as an adult. I thought it best to do it now, while he’s little and won’t remember.

The surgery went as expected, and he’s been doing fine ever since. I was sad, though, when I sent my baby away with the surgeon and operating room staff. However, it brought me back to the days when Cayden, too, was just a baby getting wheeled away for surgery. That memory helped me realize that everything would be OK.

Kyree’s procedure wasn’t my first rodeo with a child getting surgery, but I hope it’s the last time for a long time.

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.


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