Germs and CDH PTSD
The moment I was finally allowed to leave the hospital with my CDH baby was such a bittersweet feeling! On the one hand, it was amazing to finally be home, living life, but it was terrifying. It was as though suddenly everywhere I looked, all I could see were giant germs that were out to hurt my baby. I wanted to let my daughter finally enjoy the life she fought so hard for, but my job as her mom was to protect her from big germs. We spent weeks in the hospital, and the last thing I wanted was to go back. I watched her fight for her life once, and I never wanted to do it again.
From the outside, very few people could understand. Even those that should “get it” still didn’t. They saw me as controlling and overprotective - a helicopter parent. Some said I was a hypochondriac, and others would comment that I was too extreme. But I couldn’t help it. The NICU PTSD was real, and every time my sweet baby would cough, get a slight fever, or have a runny nose, my mind went to the worst. I immediately wondered if this would be the cold that would land her back in the hospital...or worse.
So, going out in public, we kept her car seat covered or used a cart cover as she got older, we wiped everything down, sanitized our hands until they were raw, and limited our interaction with large groups. We didn’t let strangers touch her and even had a sign asking them not to. We only went out when it was necessary because, as I said, I saw the world as one giant germ.
Some might say I was crazy, and maybe they would be right, but it worked. My daughter went 18 months before catching her first illness. Her lungs had 18 months to grow and get strong before being introduced to big germs. And guess what? Her first illness resulted in an emergency jet ride across the state at 1 am and three ambulance rides. She spent four days in the hospital, endured x-rays, a CT, an MRI, two rounds of bloodwork, and a shunt tap. We met our deductible with that one illness. And what was it, you may wonder? Strep. With CDH and hydrocephalus, we brought a child to the ER who was vomiting, lethargic, and pale. When you show up with a medically complex baby, no one thinks strep. They think bowel obstruction, shunt malfunction, or reherniation and immediately get to work ruling out “the big stuff.”
Illnesses for CDH kids don’t look like they do for other kids. They can be scary, extreme, and dramatic. They can be confusing, expensive, and catastrophic. Colds aren’t just colds; they can be deadly. And as a mom who is already dealing with NICU PTSD and sees other CDH babies and kids going through these scary experiences, a cough can paralyze you in fear. Not because the cough is scary, but because the unknown is. We don’t know what this cough will become, and if it does get bad, we don’t know if our baby will be strong enough to survive.
Call me crazy, call me overprotective, call me all of the things, but my little girl is here to call me Mom at the end of the day. She’s here because I protected her, because she was somehow spared from big germs, and because I disinfected that swing while other moms judged and rolled their eyes. She’s here because we missed the party, chose to keep her out of daycare, and because of our raw, over-washed hands.
And now guess what? She’s 6. She’s in public school, ballet, and gymnastics. She goes to all of the parties and does all of the things. She is living the life she fought so hard for. She gets sick, but she bounces back. She runs, jumps, plays, and loves the park. We don’t disinfect swings or avoid it in the winter. We go to Disney, movies, arcades, and play gyms. We eat at restaurants and, believe it or not, we don’t always disinfect the table.
I still see the world as a giant germ. I still cringe when I see her lick ice cream off a table, touch the bottom of her shoes, or put her fingers in her mouth, but because she was so well protected early on, I know she will be okay. Her lungs were given four years to grow before catching her first respiratory illness. Her body is stronger now, and she is able to handle bigger germs. She’s been sick, she’s bounced back, and her immune system is developing. I’m relaxing. Life is becoming more “normal.”
But it’s all thanks to those crazy overprotective years of stress and hibernation. So just know that it is okay to be “that mom,” the one they judge, the one no one understands. But as your child gets older and stronger, know that it’s also okay to reward yourselves for a job well done and live the life you all fought so hard for!
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