The remarkable journey of little Abel Storey - the Derry infant diagnosed with Biliary Atresia

His five months on this earth have been an enormous journey for both him and his parents Lisa and Jude after he was diagnosed with a rare liver disease.

Abel was just weeks old when he was diagnosed with Biliary Atresia.

Biliary Atresia is a condition in which inflammation develops within the bile ducts around the time of birth.

The inflammation can occur in any of the bile ducts both inside and outside the liver. This leads to bile duct damage, reducing the flow of bile, which causes scarring of the liver.

It affects one in every 16,700 infants in the United Kingdom each year.

Lisa had a completely normal first pregnancy and Abel came into the word three days early, weighing a healthy six pounds and ten ounces.

The couple excitedly took their newborn home and settled into the usual routine of all first time parents.

Lisa was breast feeding Abel and had already become curious about the colour of his stools.

“They were quite pale but I was reassured that breast fed babies often have paler nappies. A few days later, however, he began being sick.

“It was quite projectile and we rang the out of hours GP because we thought it just wasn’t
normal.

“He was presenting well in all other respects but, because he was only ten days old, he was admitted to the Children’s Ward for observation”.

Abel was discharged from hospital two days later.

“Before we left, they took a urine sample to check if there was any underlying infection. The following day we got a phone call to take Abel back to the children’s ward because there was a bug in the urine”.

Lisa said that, once Abel was re-admitted, she learned that a urinary infection was unusual in such a young baby and more tests were carried out.

‘At this stage, the consultants then started to look at Abel’s nappies and investigate his stools. They were magnolia coloured and the consultant Dr Armstrong raised the possibility of Biliary Atresia.

‘Biliary Atresia is a rare condition and extremely hard to diagnose so Dr Armstrong started making calls to Birmingham as there is a paediatric liver ward there’.

Further tests were carried out on Abel and the next thing the Storeys knew they were booked on a flight to Birmingham later that afternoon.

‘My husband Jude and I were a bit shell shocked. Within four hours of being told all this, we were on a plane to England.

“We had never travelled with a baby before, had no idea what to pack or no idea how long we would be there for.

‘When we got there ,we were looking around at the other children thinking Abel is grand. We thought the medical team were being very cautious sending us’.

However, their caution paid off and, at five weeks, Abel was undergoing major surgery.

Lisa admits it was the first time it hit her just how serious things were for her beautiful baby boy.

The surgical team performed a ‘Kasai’ procedure which took a number of hours. It involved removing Abel’s gallbladder and reattaching a bile duct to it to allow bile to get through to his gut.

‘He recovered so quickly from the surgery, we were a bit amazed. It is a long journey after the procedure as it can take up to six months to see if it has been a success or not’.

If this procedure hasn’t worked, the next step for Abel is a liver transplant.

‘Jude and I would have to be tested to see if we are a match to become living donors. For Abel to qualify for the transplant list, he would have to be at a certain level of sickness.

‘He is an energetic, active and lively baby and that keeps us going through it all. We wouldn’t like to see him get too sick.’

Since December 21, Abel has been on IV antibiotics because of an infection which has caused further inflammation in his liver.

The children’s ward organised home leave for Abel to allow him to spend his first Christmas at home with his parents.

Community nurses came out twice a day to administer the antibiotics at home, even on Christmas Day. Lisa and Jude then take him to hospital for his final dose.

The five-month-old has to receive 14 syringes of medicine and vitamins each day and has to be prescribed specialised formula.

Lisa says her experience has brought home to her just how good the NHS is and how lucky we are to have it.

‘You really don’t appreciate how good the NHS is until you need it.

“This is our normal. You get so much sympathy and praise from people but we don’t know any different.

“Watching getting bloods taken, having acannula fitted and seeing him get put to sleep for surgery is all very, very
difficult’

While the last five months have been ‘crazy’ for the Storey family, they have an incredibly positive outlook on life.

‘I haven’t been able to do any of the normal mum and baby stuff. But we have met so many people through his sickness.

‘Abel is always so happy and content. He doesn’t feel any pain and he will never be a strange baby because he always has so many doctors and nurses doting over him’.

‘All of this wouldn’t have come our way if we couldn’t handle it’.

The family have decided to fundraise for the children’s ward in Altnagelvin, ward eight in Birmingham and the community nurses to say thank you for their help.

‘Our journey, so far, has been life changing. We have incredible friends and family who are helping us do this.

‘The doctors and nurses in both hospitals have gone over an above for us. Everything they have done is unbelievable and they all have so much time for Abel.”

For further information about Abel and the fundraising events, go to www.facebook.com/abelstorey2015 You can also donate via https://crowdfunding.justgiving.com/AbelStorey