Here I am still

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 11^th 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.

 

When the health visitor came on July 8^th, 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.

 

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.

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.

 

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.