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Coming to terms with a diagnosis

Being told that your newborn baby has a serious liver condition is hard for any parent to take. Here Sarah describes her experience with her son James and explains how CLDF can help.

James was just over four weeks old when I noticed a bruise on his back. We couldn’t work out how he had got it so decided to just keep an eye on him. A couple of days later he just didn’t seem right, and I noticed a tiny bit of blood in his vomit, so I took him to see the GP. By the time we saw the doctor he was really jaundiced. We were very fortunate that the doctor we saw recognised straight away that this was potentially dangerous and sent us directly to our local paediatric assessment unit. It’s why the CLDF campaign for understanding newborn jaundice is really important to us.

James spent just over a week in hospital undergoing tests. His blood wasn’t clotting properly and his liver function tests were very deranged. He was really poorly. The doctors wanted to transfer him to Birmingham Children’s hospital but he was too unstable to transport. It was a very anxious time and I found it very hard going home to see all the new baby cards still hanging up. His three year-old brother also kept asking where James was. Finally, James’s results showed that he had enterovirus and sepsis but there was still a question about whether he still had an underlying liver condition. His consultant arranged for genetics tests to be completed and we were discharged while we waited.

Over the next couple weeks James really started to improve and we began to hope it must have just been the virus that had caused the liver to fail. We didn’t hear about CLDF until we  were at a follow up appointment at Birmingham and met two of their support workers. At that point we didn’t have James’s diagnosis so being handed the CLDF card with contact numbers felt like joining a club we really didn’t want to be part of.
Things changed quickly however, when we got the call to confirm that James had alpha 1 anti-trypsin deficiency and it was really important to us have someone to talk to outside the family. We then had to get James’s older brother tested and that was a very difficult wait.

Some of our first appointments at the liver clinic were really overwhelming. So when the  nurse gave us some CLDF guides which explained his condition and what these tests meant, we found them really useful. Reading other parents’ journeys on the website and the CLDF Facebook page also helped as I felt extremely guilty that James had inherited my faulty gene.

Returning to work was also a challenge as I felt anxious about leaving him in nursery. I was, however, able to give the nursery a copy of the CLDF education pack and this helped us write a health care plan for him. The staff understand his red flag symptoms and know to call us straight away if they notice any changes. As we began to feel more confident about managing James, we had our first holiday abroad and used the information on the website to help find travel insurance and understand the cover we would need.

We have slowly to come to terms with James’s diagnosis but with the condition comes a lot of uncertainty. When he was nine months old, I read the Liverlife magazine for the first time. It featured an article written by an adult with A1AD and for the first time I felt really optimistic for James. He is doing really well at the moment, but I know that, if we face challenges, there are people to help and advise us.

I decided to take part in the May Marathon this year as I really wanted to raise money to help other families like us. What I hadn’t realised when I began the challenge was the positive way it gave me a way to talk about James and his diagnosis – something I hadn’t really done before. Some people didn’t even know James had been ill and the difficult time we had experienced. For others, it gave them the opportunity to do something positive when they felt so helpless at the time of James’s diagnosis. We were overwhelmed by the support we received.

My advice to newly diagnosed parents would be that although it can be very frightening when you begin to research a condition that you don’t understand, make sure to read trusted literature such as that provided by CLDF. It can also be a lonely time when the hopes and excitement for a brand new baby suddenly change. I was very lucky that our health visitor referred me for counselling, which helped greatly in dealing with a huge rollercoaster ride of emotions. Having someone who is not within the family to talk to, such as the CLDF families officer was also really helpful. They are here to help you so make sure you take that help!

To find out more about services CLDF offers to newly diagnosed parents go to:

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