Being a Pompe parent has taught me the importance of patience

These key moments from our rare disease journey made me who I am today

Keara Engle avatar

by Keara Engle |

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At the young age of 16, I gave birth to my now 6-year-old son, Cayden. Like any new parent, I had to learn patience. I was raising a child while I was still a child myself, and it was no easy task. However, I quickly discovered that I would learn patience in more ways than I could ever imagine.

About a month after Cayden was born, we received his newborn screening test results informing me that he has Pompe disease. We’d only been home a few days at that point because Cayden had spent three weeks in the neonatal intensive care unit (NICU). His results shook me to my core. I’d been waiting for that phone call, but I didn’t know it would be one of the hardest calls I’d ever receive.

That was the first time I learned the importance of patience. I had been irritated that the results were taking so long, but on day six, I learned why I had to wait. I truly believe that Cayden and I needed those few days together at home between the NICU stay and the long hospitalization that lay ahead.

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We were in the hospital for almost seven weeks after Cayden’s diagnosis. Because he has the infantile-onset form of Pompe, his heart was severely affected. We had to wait until it started to improve, which only occurred once he’d been receiving infusions of Lumizyme (alglucosidase alfa), an enzyme replacement therapy, for a few weeks.

The wait was worth it because we finally got to go home the day before my very first Mother’s Day. It was a bittersweet moment. For so long, I’d just wanted to be at home with my baby and the rest of my family. However, I appreciate that my first morning back at home with Cayden was on such a special day.

Patience pays off

Another moment that stands out to me is when Cayden was hospitalized with pneumonia at age 3. He was in the hospital for about two months before he recovered enough to come home. During his stay, he was intubated to help him breathe, which was hard for me to witness.

The doctors and I hoped Cayden could come off of the ventilator ASAP. However, that wasn’t what happened. Cayden didn’t respond well the first two times doctors attempted to extubate him. They let Cayden’s lungs rest for another week or so, and then slowly weaned him off of the ventilator. The third and final time they attempted to extubate him, he did amazingly.

Had we continued to try and rush Cayden off of the ventilator, we might not have ever gotten the desired results. Looking back, I’m thankful the doctors were patient and took a different approach that allowed them to successfully extubate my son.

Countless situations have demonstrated the importance of patience. These are just the few that stand out the most to me. I’m thankful for my son because he has shown me a different way of viewing life. Without all of these experiences, I wouldn’t be the young woman I am today.

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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