When "rare" becomes your reality | OHSU Foundation

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“It’s been such a privilege and an honor to be able to look another parent in the eye and give them that support – I see you, I know how you feel. We were here.”

Austie Eckley is a mom of four, including 6-year-old Charlotte. Last fall, Charlotte was hospitalized with a condition called multisystem inflammatory syndrome in children (MIS-C). In this audio story, Austie reflects back on their time in OHSU Doernbecher’s Pediatric Intensive Care Unit (PICU), the meaning of the word “rare” and why she felt called to return to Doernbecher in a volunteer capacity.

Transcript

Hi there. My name is Austie Eckley, and I am a mom. I have four daughters. My husband and I were recently here at OHSU with our youngest daughter, Charlotte. You know, right now I feel like there’s so much information coming at us from so many different people, and a lot of it can be scary, confusing, and really, it can be hard to know what to trust. 

But what we’ve learned is what you can trust people’s personal stories. So I want to share our story today so that you have something that you can hear and trust. A couple of months back, we had COVID in our home and our daughter Charlotte had it as well, but had hardly any symptoms. And then about a month after that, she came in with a really severe stomach ache, a really high fever and we were just told that it was probably a virus. 

So we went through the weekend, and she progressively got worse. By Monday morning, she was admitted to the ICU here at OHSU Doernbecher. Our life that morning took a drastic turn. It was really, really scary. We were admitted to the PICU, and within about a day and ahalf, Charlotte was put on life support, which she remained for about five days. 

And during this process, we were informed that what Charlotte had was a post-COVID condition called MIS-C, which basically everything in her body was inflamed and fighting against itself. This was confusing. It was a lot of information at once and all at the same time, we were watching our precious baby on a machine that was helping her breathe, and so just being at OHSU helped us feel secure. It helped us feel safe. We knew that we were being taken care of by the best people that could be taking care of her. And we’re just so thankful for everyone that works here from housekeeping to the nurses, to all of the extra support like PT and OT, and the doctors, the nurses, the food services. Everybody here works together for every family. 

And that is something that we are so incredibly grateful for. After 11 days, Charlotte was discharged to come home, and she’s been thriving  and healthy ever since. It’s still scary. Obviously, we still think back to that time, and there’s still a lot of feelings involved there, but we feel really taken care of. And we have a support team here now at OHSU that if I have any questions, if there is a mark on her skin that I don’t like, I can shoot a message over and get the support that we need to feel confident in her continued health.

In the beginning of COVID, we had heard about MIS-C, and I remember hearing that it was rare. And so naturally, as a parent, I remember thinking, “Well, that’s not going to happen to us, right? Because it’s rare.” And then it did happen. And when it happened, it made rare — the word “rare” — have a completely different meaning for our family. I remember thinking that I can’t believe this is happening to us, right? This wasn’t supposed to happen to us. But what it did is it changed the way we look at things that are considered rare. It gave us a heart for families going through things that are considered rare. And I think that it’s easy for us to get into a headspace that if it’s rare, maybe we don’t think about it as important is something that is more common. 

But the truth is rare matters. Rare is someone’s reality. And even if it’s not your reality or my reality, it’s someone’s reality, and as a community, as people, we need to care about the rare. We need to care about every family going through whatever situation they’re going through. And that’s just really something that we have learned going through this process ourselves and being a part of Doernbecher. 

Because the truth is, when our daughter was in the PICU, it wasn’t just our daughter that was there. And as we would walk through the halls to go to the restroom or to go to get food or to check on our older girls, we walked by so many other hospital rooms with other babies, and a lot of them were there for rare reasons. 

And so rare just has a completely new meaning for our family. And it’s really important to us. One of the coolest things that I’ve got to be a part of since Charlotte was sent home was I’ve gotten to come and volunteer here at Doernbecher. I get to help on the team called Nourish, where we are providing food for moms and dads and caregivers of kids currently here at Doernbecher. 

And that’s just been such a privilege and an honor to be able to look another parent in the eye and just give them that support, in that I see you and I know how you feel, and we were here. And just to be able to be somebody that knows what they’ve been through and what they’re going through currently has been a real gift to me. 

And just being able to be a part of a team that’s also coming alongside our community here and helping families and and supporting families is something that I’ve just really loved getting to be a part of.