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CLDF BLOGS

Have hope and pray

Faye, who is 34, and was born with Biliary Atresia wants her story to give hope to others.

I was very jaundiced as a baby and was lucky that this led to me being diagnosed with biliary atresia relatively quickly, so I had a Kasai when I was five weeks old. Within a few years, my liver began to deteriorate, however, and I used to miss a lot of school either due to being in hospital or attending appointments.

                                                                                   Faye as a baby with her mum, Julie.

When I was six years old, I had a transplant. I can still remember being at my nana’s house and my mum ringing nana to say ‘ Get her ready – the liver’s ready’ and being taken straight to Birmingham Children’s Hospital. I even remember counting down as they put me to sleep.

The transplant completely changed my life, I was healthier in every way and could do so much more. It must have been a relief to my parents. I was too young to worry about my liver condition but I know that my parents received a lot of support from CLDF when I was poorly and the charity meant a lot to them. Up until his death very recently, my dad still received the CLDF magazine, he left money to CLDF in his will, and it was also his wish that donations at his funeral came to the charity.

I was always told that any pregnancy would be high risk so when I was expecting my first child, I was referred to Birmingham Women’s Hospital for the antenatal care and the birth, so that I had access to specialist care. I was closely monitored but everything went well and although I was regularly monitored through my two subsequent pregnancies, I was able to have the children in my home town. They are now 13,12 and 5 and perfectly healthy.

                                                                             Faye’s children Kamuran, Kaiden and Zara

As for myself, apart from the anti-rejection tablets I take, and the fact that I have blood tests every few months, my life feels the same as any other mum. I work part time as a cleaner, which is an active job, I exercise, and many people who know me are surprised to hear that I have had a transplant.

I must admit, though, that I was very worried about Covid19 and at the beginning of the pandemic I shielded for three months. I did eventually catch it in September 2021 after I had received my first two jabs and I was ill for about six days, feeling very poorly for the first three. After that, however, although I had a cough and lost my sense of taste and smell for about a month, I wasn’t any more ill than other people without underlying health conditions.

                                                                                           Faye and husband Simon 

To parents of other babies with biliary atresia I would say have hope and pray. My mum and dad prayed a lot and in my eyes it worked. I’m now 28 years post-transplant, I have three healthy children, I’ve beaten Covid19 and I just wanted to put some hope out there that you really can lead a normal life.

Join the discussion One Comment

  • Jason Endress says:

    What a lovely story Faye and thank you for putting it out there. Our youngest was diagnosed with BA and had the Kasai in 2015. One of our worries is that she might not be able to have children in the future, however even after a transplant you were able to, it was meant to be. Wishing you and your family happiness.

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