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Lajlah who is 48, was born with biliary atresia, and still has her native liver. She’s happy to share her story which she hopes will help others but first we hear from her mum Lesley.


The early days

Lajlah was born on June 11th 1975 at  Barnet General Hospital, weighing in at 7lbs 8oz. The labour and birth were straightforward and she was a beautiful baby with big dark eyes and black curly hair. Although her eyes were clear, her skin had a brown tone to it which we thought unusual as her dad (Michael whom we sadly lost when Lajlah was seven)  and I are both fairly pale.

Lajlah was a beautiful baby who did not initially appear to be unwell


When the health visitor came on July 8th, I shared my concern about whether her skin tone was normal and also mentioned that her stools were white. I took her to the doctor who could find nothing wrong but when the health visitor came again a week later, she was still concerned and advised us to seek a second opinion.

I did and this resulted in Lajlah being booked into Belgrave Children’s Hospital for tests. The tests were inconclusive and she was sent home but my health visitor, luckily, was not satisfied and said that more were needed. We were referred to Kings College Hospital for further tests and when we got back to Belgrave we were visited by Dr Alex Mowat from Kings who explained that Lajlah had a rare liver condition called biliary atresia and that she urgently needed surgery.

This was a dreadful time for us. We were told that if she did not have the surgery she would not survive but they couldn’t guarantee how well she would be if we did go ahead. I remember being told there was a risk of brain damage due to the bile in her system. I even remember during one conversation a member of the team (not Professor Howard or Dr Mowatt) telling us to go away and have another baby.

However we knew that Mr Howard had done this operation successfully once before as he had seen in performed in Japan a few months previously. There was much excitement over this new surgery as all babies with biliary atresia had previously died.

So we went ahead with the operation. After surgery Lajlah was at Kings for quite a while for checks and observations but she was able to come home for Christmas. I had a list of medicines to give and we had to go to Kings every fortnight for checks. Dr Mowatt was so good – happy with the progress she was making but still not thinking Lajlah would live for long. She was very sick.


Lajlah’s medicine list

Throughout  the next two years, however, there were slight improvements and our hospital visits went down to monthly. By the end of 1977, I recall Professor Howard had become a Mr, Dr Mowatt had become a Professor and Dr Mieli Vergani had joined the team. By this time we were told that although Lajlah was doing well, they had no hopes for her long term survival as they simply did not know – they had no references – but they did not think Lajlah would survive until puberty.   And if she did get that far, she would never have children. But as I’ve said they had no idea. Visits went down to six monthly and then yearly.


Lajlah takes up the story…

I honestly don’t remember when I became aware of having this health issue or at what age I was told. I know I was in and out of hospital a lot as a baby but I don’t remember missing much school or feeling any different from my peers. I do recall that I was advised not to do anything too strenuous or partake in sport. This meant PE was a no no but that wasn’t a problem as I didn’t like it! To be honest as I child, my liver condition wasn’t something I thought about. Mum treated me exactly the same as my siblings, I wasn’t wrapped in cotton wool and treated as “precious” . I’m really glad she did this as it hasn’t stopped me from leading a “normal” life.

After school I went to university, which I enjoyed and had a good social life, got my degree in Food Science and after I graduated, I met my husband and we travelled for a year. On returning, I was pregnant with my first child, Elly. Given my history, the main thing which concerned doctors was that I may not be able to carry a child full term. Also that due to having consistently low platelets I may have had to have blood transfusion on giving birth. So because of this I was closely monitored and doctors insisted that I had the baby at Kings. I was tremendously lucky, the pregnancy and birth were normal and Elly was born at full term weighing a healthy 7lb 4 oz. I went on to have three more children and had no complications with any of them. And although my four beautiful children do have some health issues, both mental and physical, none of them are liver related.

Lajlah and her daughters (left to right) Elly Georgy Sophy.

I have worked all my life – I have managed many pubs, I qualified as a nursery teacher when Elly was born and I am presently working with elderly people in an assisted living complex –  and have not let my liver condition stop me from doing anything I wanted to do.  My health at present regarding my liver is exceptional. I’m not on any medication. I have routine bloods every six to 12 months which show occasional enzyme discrepancies. I see a consultant about once a year and that’s when I am told that I will eventually need a liver transplant , although at 48 with no current issues to speak of I’m not so sure about that.  I would definitely say I’m facing the same issues as most women my age  – more grey hairs, eyesight getting worse, menopausal and dealing with emotional teenagers!

My life has been full of ups and downs, twists and turns, good and bad, much of it nothing to do with my liver at all. A strength of character and a belief in yourself can get you through anything. I am a firm believer in fate and that everything happens for a reason. I was born like I was and meant to be a survivor and so here I am still. I keep constantly busy and my kids are my inspiration.


Lajlah and her son Finley

There was no CLDF when I was first diagnosed and I only became aware of the charity a few years ago. I’m very happy to share my story and I really hope it gives some hope and inspiration to others.

Join the discussion 5 Comments

  • Clare Wesley says:

    Your story has made me cry, so amazing to hear of one of the first Kassi’s in the Uk and that you have not need to be transplanted.It was the milk/medicine list that did it, brought back memories of coming home with my daughter after her Kassi which she had 32 years ago this week, performed by Mr Howard with professor Mowart and Georgina Vergani leading the team that looked after her. She was not as lucky as you and needed a transplant at 13, she has had had ups and downs but mostly she has been well. I will always be so grateful to the amazing team at kings. My daughter is now a paediatric nurse and has looked after a handful of children with Billary Atresia. I was part of an the West Sussex branch of CLDF who raised a good sum of money for the charity, the biggest drive to raise the money was the hope that a cure would be found for this disease or at least make sure babies are picked up early so the have a good prognosis. If your baby is jaundice after 2 weeks get them checked out. Thanks for sharing your amazing story.

  • Linda says:

    Hello Lesley and Lajlah,

    I was so moved by your story and felt I needed to write to.

    I am so amazed that you have battled through this condition and now 47,
    I hadn’t known of anyone , I so relate to everything you describe, my daughter Natalie born October 1973, a beautiful baby with big blue eyes, no one picked up she was ill, pale stools and dark urine I mentioned to health visitor but told all ok. Natalie went into hospital at 10 weeks old with chest infection. Within days our lives were turned upside down, she was moved to Queen Elizabeth childrens hospital Hackney. It was first thought she had hepatitis, Natalie underwent 2 operations, then were told it was Biliary Atresia eventually it was decided to do the Kasia, she was 8 months by now, after 4 hours we were told her liver was too damaged to do it. Natalie died 2 months later, I was contacted by Mr.Alex Mowat from Kings who asked could he have her liver in order to help him save lives of other babies born with Biliary Atresia, he was so grateful as it’s very rare.

    I would like to think this helped others including you .

    As you say no CLDF , I have over the past few years raised money on BGY, feel it’s good to do something in her memory. I have 3 other grown up children and 3 grandchildren, but still remember her like it was yesterday.

    Am so happy you made it.

    Kind Regards
    Linda Rodriguez

  • David says:

    As a Father of a beautiful 4 year old boy with Biliary Atresis, this is lovely to read. Thanks for sharing.

  • Katie says:

    Thank you for sharing your story. It’s moving to hear about your life and how you and your family have coped. One of my twin daughters has biliary atresia and had her Kasai almost 3 years ago. She’s a very head strong 3 year old with a lot of determination. Katie.

  • Karen east says:

    Thank you for sharing. My son with Biliary Atresia is now 18 (native liver) and this takes me right back to when he was born. Extremely scary time at diagnosis (emotional, new baby, away from home). Forever grateful for all the research, cldf and the amazing medical team. We were at Birmingham Children’s hospital.
    One thing for sure, you never stop looking for signs as a mum of someone with a liver condition – always check health, always look for signs of jaundice, always worry a little.
    But I feel fortunate that we have so much research happening and that more is being understood. Sending love and strength to anyone on this same journey especially if you have just had a diagnosis with your new baby.

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