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

Hello everyone,

I'm creating this post because, like many here I imagine, when you receive the diagnosis of post-infectious bronchiolitis obliterans for your child… you take a blow.

And above all, you're afraid.

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

Today, I'd really like to get concrete feedback from parents who live with this on a daily basis.

But before that, let me share our reality.

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

And our life… is clearly pandemic-worthy.

We don't go out without a mask. Everyone who comes into our home, including professionals, has to wear a mask. We take no risks.

All the professionals told us the same thing: the slightest virus can send him straight back to the hospital.

So we're extremely careful, especially during the first two years.

After that, we're told we'll have to continue being vigilant… but honestly, we still don't know what the future will look like.

I'm not going to lie, it's not the easiest life. But we tell ourselves one thing every day: at least, he's not in the hospital.

And that changes everything.

So, I'd really like to hear your feedback: • How old is your child today? • How was he/she at the beginning, and how is he/she now? • Does he/she need oxygen or respiratory support? • Can he/she 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 arrive here after us, lost, worried, and searching for hope.

Because what's missing most at the beginning… are real testimonials.

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