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I’d advise anyone to ask for help

Giving birth to twins, with Covid restrictions in full force and a two year old waiting at home, is plenty for any mum to contend with. When one of those twins turns out to have biliary atresia, things move to another level. Katie shares her story here.

My identical twins, Rosie and Daisy, were born six weeks early in January 2021. They were both jaundiced but I’m a neonatal nurse and I knew that, particularly as I was breastfeeding them both, that this was nothing out of the ordinary.

So even though Rosie had to go under the phototherapy lights, I didn’t worry as I knew this was common practice. When we were all discharged after five days. I was very happy to get home to my two year old son, Marley and was looking forward to settling into our new family routine.

On one of her first visits, my midwife expressed concern about Rosie’s jaundice and we had to take her back to the hospital for further sessions under the phototherapy lights. Even then I didn’t panic because Rosie was feeding and putting on weight. It was when she had a  prolonged jaundice review, as it was still present at three weeks, that I knew something was not right. The hospital called to say that they were not happy with her blood results and that there were indications of biliary atresia.

I knew instantly that this was serious and the few weeks were pretty stressful. I had to make numerous journeys to our local hospital, The Princess Royal in Telford,  a 45 minute drive away for blood and stool checks for Rosie but, because I was breastfeeding both, I would have to take Daisy along too.

Rosie’s jaundice was a cause for concern

At four weeks, Rosie was referred to Birmingham Children’s Hospital where doctors, having checked her jaundice and stools, were pretty sure that she had biliary atresia but said they would need to operate to be certain and if it was the case, would perform a Kasai.

We were admitted to Birmingham on the Sunday, Mothers’ Day, and she had her surgery on the Wednesday. I was so hoping that it would not be biliary atresia and that there would be some other explanation for her symptoms but  they confirmed immediately after the operation that it was. At least we had an answer.

Rosie and I were in hospital for 10 days in total . Because of the Covid restrictions, there were no visitors, my partner (now my husband) Alex could not stay with us and I couldn’t see Daisy or Marley during that time either. I was lucky, not only that my in-laws were able to help look after Daisy and Marley, but that Daisy took to bottle feeding during that time.  However it was still very tough for the whole family. The babies obviously were too little to know what was going on, although I was concerned about Daisy being separated from Rosie and from me for such a long time. I did worry for Marley, though, who at two years old, had suddenly seen his mummy disappear. He must have felt so confused and yet he was – and still is – really good about everything.

When we did return home I was surprised and pleased to see that Daisy took to breastfeeding  once more and that the girls showed no obvious effect from being apart from each other.

Rosie after surgery

I first heard about CLDF when I was in Birmingham Children’s with Rosie. The literature which the staff had given me about biliary atresia came from CLDF and they suggested I would find their website helpful. They were right. I started following CLDF on social media and signed up to receive newsletters and information.  When I got home I made contact with Kate, the families officer, and she was so helpful.

One of the many worries I had about our new situation was money. Spending so long in hospital had put a real strain on our finances. Alex is a lorry driver and only gets paid time off for annual leave. Kate explained what we may be entitled to and helped me apply for DLA.  It made a real difference and was one less thing to worry about.

Since then I’ve contacted CLDF plenty of times – usually by email in the middle of the night when a pressing new question has occurred to me but someone always comes back to me the next day!  I’ve since had advice on travel insurance (which I thought would be so expensive, it would prevent us from going on holiday) thanks to CLDF and I know that when Rosie starts nursery, there will be more information available.

Rosie today

What I particularly like about CLDF is that all the information and advice is for people in our situation. Where else are you going to find such specific resources? I would advise anyone who has a child with a liver condition to get in touch even if – like me – you’re not used to asking for help. You will certainly feel better when you’ve done so.

Rosie is currently doing really well and it feels like we mostly need a normal life. It’s only when we go back to hospital for checks or if she has a fever that the reality of it all hits me and that can be hard. I think that’s maybe the reason that I’m not yet ready to read the stories on the website about young people who’ve grown up with liver disease and the fantastic things they have achieved. But one day I will.

For now I’m so grateful for the advice and support we’ve had so far and knowing that they’ll be there for Rosie in the future is a real comfort.

Katie and Alex’s wedding in May 2022

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