Post-infectious bronchiolitis obliterans in children: what life after diagnosis? Parents' testimonials

Hello everyone,

I'm posting this because, like many of you I imagine, when you receive a diagnosis of post-infectious bronchiolitis obliterans for your child… it hits hard.

And especially, you're scared.

Scared for the future. Scared of what their life will be like. Scared of not knowing.

Today, I'd really like to hear concrete feedback from parents who live with this every day.

But before that, I want to share our reality with you.

Our son was diagnosed at 6 months old. Today, he's one year old.

And our life… is clearly like living through a pandemic. We don't go out without a mask. Everyone who comes into our home, including healthcare professionals, has to wear a mask. We take no chances.

All the professionals told us the same thing: the slightest virus could send him straight to the hospital. So we're extremely careful, especially during the first two years.

After that, we're told we'll need to stay vigilant… but honestly, we don't yet know what comes next will look like.

I won't lie, it's not the simplest life. But we tell ourselves every day one thing: at least he's not in the hospital. And that changes everything.

So I'd really like to hear from you. Here are the questions you can answer (go through them one by one so it's clearer for other parents who will come read this):

• How old is your child today?
• What was he like at the beginning, and how is he now?
• Does he need oxygen or respiratory support?
• Can he live "normally" (daycare, school, activities…)?
• Do things improve over time?
• How do you manage infections, winters, fatigue?

I think this feedback is essential. Not just for us today, but also for all the parents who will come here after us, lost, worried, and searching for hope.

Because what's most lacking at the beginning… are real testimonies.

Thank you so much to those who will take the time to reply 🙏