We are parents of 2 & half year old Emily. Emily was 4 weeks old when we thought she looked a bit jaundiced, being a bank holiday weekend we took her to the nearest emergency doctor who told us to go straight back to Holles St where she was born.

After doing some blood tests we were shown results which made no sense at all. Basically something was wrong with her gall bladder and liver and would have to stay in. A consultant later came in to talk/explain to us but we were in far too much shock to take everything in Emily had an X-ray and ultrasound done and initially no one was sure if she had a gall bladder. For me it made no sense as I had experienced no problems during my pregnancy and surely something like this would show up somewhere, wouldn’t it?

I am sure I am not alone in having felt this way.

We moved over to Crumlin hospital on the Monday and on the following day Emily was set up for scans and ultrasounds again. She had a biopsy done the next day which diagnosed BA and 48 hours later she had her Kasai operation, after 5 long days of waiting for a dirty nappy we were delighted to be able to feed her again.

So far Emily has been well was admitted to hospital once with a viral infection and in A+E a couple of times but luckily never with cholangitis, since our last group meeting she got called in for an endoscopy and varices banding.

Emily’s health is ok at present, up to the usual 2year old tricks, including typing beside me so apologies if this has rambled etc.

Lastly things we learned. As I think most parents discovered, pale stools are not normal even for breast fed babies. I just wish the Public Health Nurse had asked about colour as well as if she was having wet/soiled nappies. An education issue for the whole health system not just our local nurse.

While still in hospital after having Emily one nurse in Holles street passed a comment that she looked jaundiced, took a second look and said no it must be the light. I would now advise any parent who hears a comment like that to ask for a second opinion, having said that an earlier diagnosis would not have changed much in our case.