Missing Holidays Due to Hospitalizations Takes Its Toll

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by Keara Engle |

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The holiday season is upon us again, which has me thinking about the many times in the past couple years that my 3-year-old son, Cayden, and I have missed holidays due to emergencies. Cayden has infantile-onset Pompe disease, which has landed us in the hospital more times than I care to count.

Cayden was born on Feb. 27, 2018, and immediately rushed to the neonatal intensive care unit due to breathing difficulties. He spent three weeks there, including on St. Patrick’s Day, the first of several holidays we would spend in the hospital. I was really upset we couldn’t celebrate at home that day.

Then, shortly after leaving the NICU, we had to rush to the Children’s Hospital of Philadelphia, where Cayden stayed for six weeks before we could return home. This caused us to miss his first Easter. Despite the circumstances, hospital staff organized a few craft-making days, and we took lots of pictures to celebrate the best we could. Thankfully, we made it home the day before my first Mother’s Day, which meant a lot to me.

missing holidays | Pompe Disease News | Baby Cayden sleeps in a hospital bed on Easter in 2018.

Cayden’s first Easter in 2018 was spent in the hospital. (Photo by Keara Engle)

Due to his infusion schedule, Cayden also ended up being in the hospital on his first birthday. He was scheduled for enzyme replacement infusions on Wednesdays, which just happened to fall on his birthday. These infusions are crucial for people with Pompe disease, so I decided we would just celebrate his birthday over the weekend instead.

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Most recently, Cayden had to miss Thanksgiving due to being hospitalized from respiratory syncytial virus and enterovirus. While these viruses can cause cold and flu-like symptoms in healthy children, they are dangerous for kids with infantile-onset Pompe disease. Cayden was extremely sick during Thanksgiving, but thankfully, my grandmother offered to stay with him so that I could enjoy a nice meal with my family. While this meant a lot to me, I was still upset that Cayden couldn’t be with us.

Missing holidays and other important events is heartbreaking. I know we aren’t the only rare disease family to experience this, but it certainly feels lonely. These are times meant to be spent at home with family and friends, but we’ve often had to spend them cooped up in the hospital dealing with unbearable situations.

While I wish I could say we won’t miss more holidays in the future, I know that’s likely not the case. Although we can’t always spend these important days at home, my family does their best to make us feel included in any way possible, and I will always be thankful for that.

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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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