Federica’s story

Federica, is a member of the ELF childhood bronchiectasis PAG and mother to a 15-year old with bilateral bronchiectasis from Italy. She shares her experiences of transition.

Last Update 06/03/2024

Good morning, I am the mother of 15-year-old Anna. She was diagnosed with bilateral bronchiectasis at 4 years old.

From birth she had always been well, then when nursery school started, we went from happiness to sadness at seeing Anna always sick every 10 days or so.

Among other things, a small cold quickly turned into bronchitis and bronchopneumonia. Then obviously she was hospitalised first for pneumonia in the right lung then another time for the left lung, always with oxygen. After several hospitalisations, I was told that it was normal for children who went to nursery school and that many pneumonias healed in a week and that I was too anxious.

Then there was one Christmas when Anna was very ill, and was admitted to another hospital and here, unlike the other hospital, the head doctor, after my request for help, did a CT scan. Bilateral bronchiectasis was diagnosed.

From this moment on we no longer sent Anna to nursery school… we were looked after by one specific Doctor and his number and contact details were given to us by the head doctor who did the CT scan.

Now that Anna is 15 years old I can say that she is a strong character and a determined girl. She is in her second year of high school. When she has a bad cold, we start with antibiotics (sometimes in cycles when she has a very high fever). Anna has been doing aerosol breathing exercises alone for about 10 years. She puts on aerosols and breathing exercises in the evening before going to bed. She does it without any problems and has never refused or complained, probably because she feels better for it.

We have extended with the paediatrician until 16 years. As for the transition to an adult doctor, we aren’t thinking about it yet because it’s a few months away, but I’m also calm because I know that our current doctor will help us with this transition. In my opinion it’s important that you don’t feel “alone” and psychological help would be a great thing.