Welcoming a brand-new member of the family

Two weeks ago, I gave birth to another beautiful baby boy named Kylan. Our family is ecstatic about our new addition, and Kylan feels like the last piece to our puzzle. My 6-year-old son, Cayden, and 20-month-old son, Kyree, love to hold him and help do things for their baby brother.

The day after I gave birth, I made the difficult decision to get my fallopian tubes removed. I thought long and hard about it, and in my heart, I know I did the right thing.

There are a few reasons for my decision. One of the biggest is that I’m a carrier of infantile-onset Pompe disease. Cayden was diagnosed with Pompe disease via newborn screening shortly after birth. Pompe is inherited in an autosomal recessive pattern, which means that a child can be affected only if both parents carry the mutated gene for Pompe. If that happens, there’s a 25% chance the child will have the disease.

Recommended Reading

May 29, 2020 Health Insights by Emily Malcolm, PhD

Genetic Testing for Pompe Disease: What to Expect

Although my younger two children don’t share the same father as Cayden and aren’t affected by the disease, they might still be carriers of Pompe disease, just like me. Both of their newborn screening tests came back negative for Pompe, but the test doesn’t show whether the boys carry the mutated gene that I do.

Cayden Camacho holds his new baby brother, Kylan Clark. (Photo by Keara Engle)

This situation is one we’ll discuss as they get older. I’d like for them to get a carrier screening test done before they have children of their own, but that decision is ultimately up to them.

Another reason I decided to get my tubes removed is because I’m affected by dangerously high blood pressure when I’m pregnant. I was induced a few weeks early with all three of my children because of blood pressure complications.

Even though my doctors have always been on top of things, I don’t like to experience blood pressure issues while pregnant. I’d hate for something to happen that would leave me unable to care for my boys. I don’t want to risk getting pregnant again and going through that.

After I came out of surgery, I had a better sense of what Cayden has gone through during some of his operations. Mine was done via laparoscopy, just like Cayden when he received his gastrostomy tube and Nissen fundoplication. Even though the incisions for laparoscopic surgery are fairly small, the recovery still isn’t enjoyable.

This procedure was my first time receiving abdominal surgery, and I hope it was the last. The pain I experienced made me feel so bad for Cayden, knowing that it’s something akin to what he’s had to go through at such a young age. Thankfully, it’s been years since that happened, and we’re hoping he’ll have no more surgeries anytime soon.

I’m glad my operation is out of the way now. I’m over the worst of the healing process and feel better with each passing day. Settling into motherhood as the parent of three boys has been quite the experience, but I wouldn’t trade it for the world.

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.