My Son, Who Has Pompe Disease, Is About to Become a Brother

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by Keara Engle |

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A little over a year ago, I wrote a column discussing the topic of family planning. Recently, we discovered that our family will be growing by one! We have lots of planning to do before my new baby comes next January.

Of course, we are happy about the news — although my 4-year-old son, Cayden, may say otherwise for now! While Cayden is still pretty young, I think he’s starting to understand what I mean when I say, “Mommy is having a baby,” or, “You’re going to be a big brother!” He seems a little jealous, but I think he will adjust to having a new sibling pretty quickly.

There are some concerns that come along with having another child. Of course, I already know that I am a carrier of the gene for infantile-onset Pompe disease, because Cayden already was diagnosed with the disease. However, for the new baby to inherit the disease, my new partner would also have to be a carrier, which is pretty rare.

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My partner did not complete genetic testing prior to us getting pregnant. However, my doctors have said that we can get genetic testing done for him fairly soon. The test usually just requires a saliva or blood sample, which are both quick and easy options.

I’m not overly concerned about the chance of my partner being a carrier of Pompe disease. Cayden’s dad is a carrier like I am, which is why Cayden has the disease. So if I ran into the odds of having children with not one, but two different carriers, I’d be pretty shocked, to say the least.

Pompe disease carrier | Pompe Disease News | An ultrasound image.

Keara’s first ultrasound in May. (Photo by Keara Engle)

Another big concern I have about having another child is what will happen if Cayden gets sick and needs to be hospitalized again. Most hospitals allow minor siblings to visit during the day, but they aren’t allowed to stay overnight with the patient, which is understandable. Typically, one to two adult family members are the only ones allowed to stay with a child overnight while they are hospitalized.

It will be a little hard if this situation occurs, and I haven’t really thought of the best way to handle it. I think it’s a bridge we’ll have to cross when the time comes.

I plan to breastfeed the new baby, as long as it works out. When you breastfeed, you have to physically be there with your baby in order for them to eat. You can pump your breastmilk, which is what I did for Cayden, but I’d like to have the experience of actually breastfeeding this time, if I’m able to.

Despite these fears, we are very ecstatic. I can’t wait to see Cayden get to be a big brother! He is typically very interested in babies, but I’m curious to see how he will react once he notices that this baby is here to stay. It will be a big adjustment for both of us, but it is one I am looking forward to!

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.


LeNa Amburn avatar

LeNa Amburn

Hi, Frist try to keep the umbilical cord, you never know when they are going to find a cure for something from cord blood, or even do a study. And start making a plan about who can help care for your children. You might have to leave your older Child at the hospital, while you take care of the new baby. Maybe his dad can spend the nights with him. You can do this!!! Be prepared even a friend can help you, build a support family for you and your children!!!


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