Yellow Alert Stories

Why I welcome the Yellow Alert app

Louise is mum to six year old twin girls. Her diary of those early days shows how vital it is that symptoms of liver disease are recognised as early as possible.

Wednesday 26th August 2009

I gave birth to two beautiful girls.  Sophie Florence (4lb 10oz) and Megan Grace (4lb 6oz). They were born at 34 weeks and four days into my pregnancy.

Friday 28th August 2009

I was told by the midwives in the transitional care ward that Sophie was jaundiced.  They told me this was 'normal' for a premature baby and that there was nothing for me to worry about.

When feeding both babies either I or the midwives would look and note if Sophie appeared jaundiced.  This continued for the first 10- 12 days.  Then, one of the midwives informed me at feeding time that she wasn't jaundiced anymore.

Both of the girls had problems with their sucking reflex and so we stayed in hospital while this developed.  There were regular checks on them both by midwives and doctors.  I expressed my concern that Sophie was not feeding as well as her twin and that her stools were not the same as her twin, regularly during our stay.  One of the midwives dismissed this and told me to remember that they were not the same child and they are all different.

Tuesday 15th September 2009

We were eventually discharged, however as Sophie still wasn't feeding very well or thriving like Megan, this was on the condition that a Health Visitor come to our home to weigh her until she 'picked up'.

Between 17th September and 28th September we were visited every other day by the health visitor, who weighed both babies and checked their general wellbeing.  She also checked on how I was feeding them, changing them, she noted the pale colour of Sophie's stools when she was changed during most visits (Sophie had lots of nappy changes) and even tried feeding her on some occasions.

I continual expressed my view that Sophie was difficult to feed, very sleepy and not thriving like her twin.  We often discussed her stools.

Monday 28th September 2009

The health visitor came and told me that she was concerned, as was I, about Sophie and that she wanted me to make an appointment with the GP. 

I telephoned and made the appointment for that day.

When I visited the GP I explained the situation, my concerns, the health visitor’s concerns and gave him Sophie's red book to review.  He didn't even open the red book although this contained the health visitor’s very thorough notes.  He examined Sophie, asked me if there were my first children (which I didn't see any relevance in this question). 

The GP told me jaundice was to be expected in a premature baby and that I should wait until she was term. I explained that at this point she was only two days off that!  At which point he said we should leave it another couple of weeks and see how she was then.

The following day I told the health visitor all of what was said and while she looked surprised, she made no comment.

Thursday 1st October 2009

The girls and I went for our six week check-up.  This was a different lady doctor, who I again explained everything to, she examined Sophie and agreed with the other doctor’s recommendation to review the position in a couple of weeks.

Monday 26th October 2009

I returned to the GP with Sophie and Megan as well as my mum.  We saw the original doctor, who was still reluctant to be concerned and eventually suggested we could have a blood test run at the local hospital.  I had to push him for this, telling him that I was concerned to know  what was wrong with my baby.

Upon reaching the local hospital the whole situation changed - my concerns were recognised and understood.  We were fortunate that the Paediatric Consultant had previously worked on the Paediatric Liver Ward at Kings College Hospital.  She recognised Sophie's symptoms to be those of biliary atresia.

Sophie had her Kasai aged 65 days.  Although she seemed well initially, the Kasai was unfortunately not a success and she was given a liver transplant when she was three years and nine months. She is now well and enjoying life.

I wish that the midwives at the hospital had recognised Sophie's symptoms.

I wish that the doctors at the hospital had recognised the symptoms and run a split bilirubin blood test.

I wish the GP had recognised I was not an over anxious mother and instead had truly looked at Sophie's symptoms and referred us to the hospital sooner.

I truly wish the Health Visitor would have known how to tell me what her concerns were and to show me what she saw and what that meant. 

Finally, I wish I had been given the information for me to understand what my instincts were screaming at me!

To promote the early diagnosis and referral of liver disease in babies, Children's Liver Disease Foundation have developed the free Yellow Alert app.

To download the app, please click the buttons below...

Please note there is an error on the iPhone app (on the bottom row of the Test and Referrals table, it should read “>20% (25 micromoles/l)” for the level of conjugated bilirubin.). We are updating this and the correct version will be available within the next week. In the meantime, many thanks to the eagle eyed consultant paediatrician who spotted that an arrow was pointing in the wrong direction!

This information on this site is for guidance only. It is not a substitute for professional medical care by a qualified doctor or other health care professional. ALWAYS check with your medical team if you have any concerns about your condition or treatment. CLDF is not responsible or liable, directly or indirectly, for any form of damages resulting from the use (or misuse) of information contained in or implied by the information on this site.