A Request for Research on Parents of Medically Complex Kids

Child patient in medical bed I recently heard someone say that “parenting isn’t for the weak,” and this phrase has never been more true than for parents of medically complex children. These last few posts have really gotten me thinking about all that our family has been through –not only Owen, who has been through way, way too much for a kid his age, but also my husband and I. I can’t help but wonder, how does having a medically complex kid impact parents? Can someone, please, research this?

You Can Only Suck It Up So Long. Having talked to many parents of medically complex kids, it seems like we all have a story about coping, or not coping –and I don’t just mean the occasional bouts of crying ourselves to sleep or crying in a hospital bathroom. We’ve all done that, but we’ve almost all had much more profound ways of dealing with our children’s illnesses.

I had terrible post-partum depression. I “checked-out” for about 3 months after we got Owen home from the NICU. I slept about 20 hours a day, and couldn’t even acknowledge him. My mother-in-law had to move in and sleep on our couch –and if you knew our relationship, you would be stunned right now.

This was also the worst time in my marriage to date. My husband, like me, was blind-sided by Owen’s issues; a new dad with a complicated newborn at home, he had just started a new job, and now didn’t know if his wife was going to ever return to normal again, all with his mother under his feet. Needless to say, times were tense. I don’t know if we were dealing or not dealing, but we were just trying to survive the situation.

Aside from the PPD, I wonder if I might also have some level of PTSD. I recently toured our hospital’s new facility, and when we reached the new NICU floor, which was totally empty of equipment, furniture and patients, my heart was racing, I was shaking and I had welled-up with tears. I had to excuse myself from the tour group because I couldn’t handle it. Normal response? What if I told you that Owen is now 9 years old and this was less than a year ago? And, of course, I have written about my anxiety issues, and how I have earned the nickname, Worse Case Kate…

I’ve had other parents tell me about many of cases of depression, a mental breakdown and anxiety requiring medication. As you may guess, my theory is that parents of medically complex kids suffer a much higher percentage of mental illnesses like PPD, depression, anxiety, and PTSD and, not to mention, a much higher divorce rate.

Why Does This Matter? It’s probably pretty obvious, but these kids, more than any other kids, need functioning parents.

Educate Care Givers and Parents. It would be wonderful if NICU (and chronic care units’) staff could be made aware of the signs and symptoms of parents who may not be coping well and it would also be great if these units could also educate parents of the warning signs of such illnesses, too –because the last person they are often thinking about is themselves.

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