“Biliary Atresia is such a scary condition, but Isaac fought so hard” - Rhiannon’s story

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Rhiannon’s baby boy Isaac was born just shy of 37 weeks. In her story, she shares how Isaac was diagnosed with Biliary Atresia, which he fought so hard against before he very sadly passed away just before he turned five months old.

Isaac was born at 36+4 weeks. As soon as he was born he was taken straight to the NICU where he awaited an echo to make sure he didn’t have a heart condition. We expected to go home the next day, but he was a lot worse than we thought.

Isaac was very determined to be born as soon as possible, the time it took from my waters breaking to Isaac being born was only six hours. It turns out he had the umbilical cord around his neck but luckily he was okay and suffered no injuries.

Isaac needed an echo as he was suspected of having a heart defect where one side of the heart was a lot smaller. We were told we would go home the next day as long as his heart was okay and he didn’t need surgery. The scan came back all good -- he only had a small hole in the heart which would close up over time. However, we couldn’t go home just yet.

Isaac hadn’t opened his bowels yet so he was taken for an x-ray which showed an obstruction and we were taken to Queens Medical Centre NICU. We stayed there for six weeks, while they tried to find the obstruction, and Isaac had to have bowel washouts to try and dislodge the obstruction.

Seeing Isaac hooked up to wires and light therapy was so heartbreaking but we felt like we couldn’t complain because at least Isaac was born nearly at full-term.

Isaac had jaundice at this point and had been struggling with it since he was born. It was concerning as it had been about four weeks and no amount of light therapy was helping so they contacted Birmingham.

He had multiple scans, bloods and tests, and every time he cried it broke my heart as we couldn’t do anything to help him. We were getting ready to be discharged from Nottingham when we were told that we needed to go to Birmingham so they could evaluate him.

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After a couple of days at Birmingham and we were told that Isaac would need to undergo a surgery to diagnose him. This was terrifying I hadn’t been away from my boy to the point I couldn’t check on him. We had to travel back for a day or two at some points to freshen up clothes but I could always call the check on him.

Isaac had the surgery and was diagnosed with Biliary Atresia, a liver condition where the bile can’t flow due to missing or blocked bile ducts, but luckily they fixed it during the surgery. Seeing Isaac after the operation in so much pain and hooked up to so many medications, and tubes coming out of him everywhere, I had never felt so sorry for my poor boy. I wouldn’t wish it on anyone.

After a week of recovery Isaac was discharged home - he still needed multiple medications and had blood tests every week but he was finally home with us.

After a couple of weeks at home he had to go back to hospital to have IV antibiotics. He went under again to have a central line put in his neck as they couldn’t get a cannula in. While in hospital his oxygen plummeted so had to go onto to oxygen for a night.

This was the scariest thing I have ever experienced as I was worried Isaac wasn’t going to make it even though it was just a simple central line being put in. Isaac did make it but I will never forget the fear I had.

Isaac then came back home and he spent the next two and a half months at home, but unfortunately, Isaac passed away a day before he turned five months old due to his liver condition.

His condition progressed a lot faster than the doctors expected so it wasn’t caught, but he had so much love during that time he was alive.

We are sharing his story so less people feel alone with the disease Biliary Atresia. It is such a scary condition and Isaac fought so hard.

My advice for anyone with a child with the same condition or someone who is going through child bereavement is to make sure you have a support around you, or people who are going through it as well, so you don’t feel as alone.

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