gtag('event', 'click', { 'event_category': 'PDF Download' });
was successfully added to your cart.

Basket

CLDF BLOGS

They have a special bond

Lauren’s pregnancy, birth and difficult first year all took place during the Covid 19 pandemic. She tells her story here….

fbt

Phoebe arrived on Christmas Day 2020. I had been well through my pregnancy and was able to have a home birth. Everything went well and Phoebe appeared to be perfectly fine.

When Phoebe was four weeks old, I was concerned that she looked yellow. Because of Covid, she hadn’t seen a health professional since she was six days old, so I called the  health visitor who advised taking her to A&E. I took her to our local hospital in Wigan, who did some blood tests. It was a Friday night and they asked me to bring her back the following Monday for an ultrasound.

When we did so, the doctors told me that they suspected a problem with Phoebe’s liver and contacted the specialist liver unit at Leeds. We were transferred there immediately where tests confirmed that Phoebe had biliary atresia and she underwent a Kasai procedure when she was five weeks old. It all happened very quickly and I have to confess that before this happened, not only did I not know about biliary atresia, I had no idea how much the liver actually did.

At first it seemed that the Kasai had been a success, but by June of 2021, Phoebe’s tummy was big with ascites and she had also developed varices and portal hypertension. I was told she would need a liver transplant by the time she was two. This timescale was brought forward rapidly however, when at the end of September, a vein burst and she was taken to Leeds. Here doctors explained that Phoebe was very poorly. Without a liver transplant, she would only live for another six months,  and she would have to stay in hospital until she received her new liver.

Pheobe in hospital

This was obviously devastating news. I knew there was a shortage of organ donors but also knew that it was possible for a relative to donate a part of their liver. When I asked about this, however, doctors told me that I couldn’t be considered. I’m a single mum and if I became poorly there was no-one to care for Phoebe. It was then that my mum put herself forward.

Despite the fact that my mum was only 57 and very fit and well, it was still a huge thing to do. But mum knew how ill Phoebe was and was determined to save her. She passed all the assessments in a matter of weeks and we were all ready to go with both operations at the end of October when the offer of a liver from a deceased donor came up. Understandably, surgeons would always rather avoid operating on a healthy person when they can, so mum’s operation was called off and Phoebe’s transplant went ahead. Sadly, it was unsuccessful –  her body rejected the new liver so just five days after that first transplant, Phoebe received 20 percent of mum’s liver. The doctors estimated that without the surgery she had just a few days to live.

Since her surgery, Phoebe has gone from strength to strength. In fact she’s currently doing a sponsored walk every day in June, ready for her first Transplant games next month where she will be competing in the under 5s 25 metres.We go to Leeds for regular checks and her liver function tests are all good. Mum is also back to full fitness, which is great to see.

Pheobe, Lauren, and her mum

Going through this whole process during the Covid 19 pandemic was very difficult. I wasn’t allowed any visitors – even my mum couldn’t come and see us for ages – but the staff on the ward were brilliant. I should also say a special thank you to Becki and Dan whom I met on the ward and were very supportive. Their little boy, James, had already been through liver transplant  so they told me what to expect and that really helped.

And of course, a huge thank you goes to my mum. I know that she and Phoebe will always have a special bond. When I see them chilling out together on the sofa, I think how amazing it is that those two share a liver and, despite everything we have been through, I think how lucky we are!

Leave a Reply

© 2019 Children's Liver Disease Foundation. All Rights Reserved.