As a caregiver of a child with a rare disease, disorder, or birth defect, our job is multi-faceted. My role as caregiver started out defending, advocating for, and being my children’s voices while in the Neonatal Intensive Care Unit (NICU). I needed to be their voices when they didn’t have one. I think the world of our surgeon, the nurses, and neonatal staff that saved the lives of both my boys. But sometimes as a parent and caregiver, you just know. I may not have a medical background but the moment one becomes a parent, it’s hard to explain but you just know what’s best for your child.
As a result, there are times “what’s best” may contradict with a medical professional or an insurance company. But that’s what being an advocate for a child with a rare disease or disorder requires. And as a parent, we rise and become stronger advocates than we could have ever imagined. But now that my boys are getting older (2 and 5 years old), my perspective on being a caregiver is starting to (not necessarily change as I’m still their voice but) evolve.
Let me back up just a bit as to why I am qualified to categorize myself as a caregiver. As I wrote in my blog post during Caregiver Month last year, I am the father of two boys born with a rare birth defect called congenital diaphragmatic hernia (CDH).
What Is CDH?
CDH is a rare birth defect where the diaphragm fails to fully develop (if at all) while the baby is in the womb. When this happens the abdominal organs float into the chest causing pressure on the lungs and often pushing the heart to the wrong side of the chest. The “extra” organs in the chest cause the lungs not to develop properly, at the very least, but can also result in a number of other problems as well and often snowball into many other birth defects. There is only a 50% survival rate for children with this birth defect.
The Ever-Changing Caregiver
My 5 year old has his own voice, and my 2 year old is coming into his own too. That being said, my role as a caregiver now has the added responsibility of being a teacher or trainer. What I mean is that as my boys get older, I need to teach them to become advocates for themselves. For example, it is very common for CDH survivors to have severe reflux and digestive issues. As is customary with many rare diseases and disorders, something that is “common” like a stomach bug for “normal” children may be life threatening for a child with CDH. My 5 year old is at the age where we are working with him to vocalize and tell us if his stomach is hurting him or if he has pain in his throat after eating (i.e., reflux). It is possible that the reason my 5 year old is having trouble eating his dinner (and therefore playing at the dinner table) is not due to just being a typical 5 year old. Rather, it can be something medical such as a diaphragmatic reherniation (i.e., re-tearing of the diaphragm), a twisted bowel or a blockage. These are very real possibilities and things we have to guess at when our children are too young to tell us.
Another good example would be related to athletics. Since my oldest does not have a working diaphragm, he might have issues running long distances (at some point in the future). If he has trouble catching his breath after exerting himself, it could be because he doesn’t have a diaphragm to help his lungs when breathing. This is the kind of thing that he needs to be able to recognize about his own body and also communicate to his coach or teacher.
My boys are all too familiar with x-rays because most every time they have any kind of a stomach issue, we have to rush to the ER to make sure it’s nothing serious. It’s amazing how our perspective changes so much that we actually hope it’s the stomach flu versus any of the other common issues mentioned above (which could require surgery or even be life threatening).
But the fewer x-rays we have to expose my boys to the better. This is why we work hard to encourage them to tell us how they are feeling. I often feel it’s ingrained in our heads at a young age to just “walk it off” and deal with the pain. There’s a fine line, but this isn’t always appropriate. And teaching my boys to be as self-aware as possible will go a long way to helping them stay healthy as they get older.
Unfortunately, as my oldest was born without a diaphragm at all, it is a very real possibility that he will reherniate at some point in his life. As a result, I truly believe it’s my job as a caregiver to prepare and arm him with the tools he needs to be as ready as possible if (and when) this does happen.