Ben’s Story

This is Ben. Ben has an ‘unknown’ diagnosed of ILD. It all started one evening where he was very unsettled. Ben was crying a lot it appeared that he was gasping for breath. We took him to A & E and the hospital checked his oxygen saturations. They were in the low to mid 80%. Immediately, he was transferred by blue light to the nearest specialist hospital. While he was admitted the doctors looked for all of the most obvious causes of respiratory infection however, all the basic viral and bacterial cultures came back as clear. We don’t know what triggered this. After a time the hospital sent genetic tests to Great Ormond Street Hospital and everything came back as negative. It is all a mystery; Ben’s consultants are scratching their heads a bit.

During this time Ben was oxygen for several months and we completed a lot of overnight studies. The whole experience was very worrying for us. At the moment Ben is doing very well. One of the happiest but scariest days we had was the day the oxygen company came to take the oxygen away. He has had 2 colds since coming off the oxygen but seems to be coping with them. Ben for a time was on omeprazole because he was suffering with reflux. We know there is a link between reflux and ILD and wanted to resolve this, but we were finding that the medicine was making him gag causing more of a risk. So we decided to stop the reflux meds and he seems to be fine.

Currently, Ben’s consultant is talking about repeating a CT scan in 6 months to a year. Even though Ben is doing well, it would be good to see if the interstitial spaces are clear or still affected.

We have so many unanswered questions. Was it aspiration? Was it his birth waters? There is so much unknown! All we do know is that whatever the reason, it needs further studying.

Our thoughts are with all of the other children out there with chILD.