"Yes, she was jaundiced but we knew that lots of babies are jaundiced so we didn’t really worry about that. The reason our health visitor sent us to hospital at 12 days old was because she noticed a hemangioma"

Our little girl Croía was born on July 19th 2022. At first all appeared well. Yes, she was jaundiced but we knew that lots of babies are jaundiced so we didn’t really worry about that. The reason our health visitor sent us to hospital at 12 days old was because she noticed a hemangioma (a small strawberry mark) on her right side. It was ever so slight and almost looked like a bruise but because of Croia’s jaundice, it had not been spotted on the five-day visit. Our health visitor asked us to get a doctor to look at this to verify it definitely was a hemangioma. I’m very glad she did.

We took Croia to Blossom Children’s hospital in Craigavon and the nurse practitioner and the doctor who saw her confirmed that she had a hemangioma but both also commented on the fact that she was still jaundiced at 12 days old.

They then carried out a split bilirubin blood test which came back showing extremely high levels of both conjugated and unconjugated bilirubin. While we were awaiting these blood results, we told the doctor that Croía was passing quite pale stools. He then sat us down and told us that they suspected Croía had a rare liver condition called biliary atresia but that the blood results would confirm this. It was only a few hours, but it felt like an eternity until the results came through and confirmed that she did have biliary atresia. The doctors explained that because of the rarity of this condition, she would need to be seen by Birmingham Children’s Hospital where they specialised in children’s liver disease.

The idea of flying with a tiny baby to an unfamiliar place was terrifying. It would also mean leaving our two-year-old son, Cillian, with family, which upset us even further. However, we knew we had no choice – Croía’s condition was serious and she needed urgent attention.

At Birmingham Children’s Hospital Croia, who was still just three weeks old, underwent the Kasai procedure to try to restore bile flow. Sadly, it was unsuccessful, and she had to be put on the waiting list for a liver transplant. The majority of Croia’s first year was spent in hospitals, either our local in Blossom or Birmingham Children’s, and she became more and more poorly. By March 2023, her condition had deteriorated so much that she was placed on the super-urgent transplant list. Luckily the very next morning, we got the call that they had a potential liver, and we were immediately airlifted back to Birmingham. Thankfully the liver was a perfect match for Croía and in the early hours of the next morning, the transplant went ahead. Although there were some complications immediately after her surgery, after five weeks, we were able to bring Croia home and I’m happy to say she has done brilliantly ever since. Her consultant is now happy to see her once a year which is a massive milestone for us.

If we hadn’t been sent to get the hemangioma checked, I know Croia’s condition would not have been picked up so quickly. We did know about prolonged jaundice, but the light test they do on newborns showed an improvement from day 5 to 10 so they weren’t too concerned. As for the pale stools, we didn’t ever think for a second that this was anything liver related. This was all new to us.

We were very lucky with staff and doctors that day in Blossom hospital, they didn’t show any panic (even though they knew it was serious as we were to be flown straight to Birmingham). They sat us down calmly and explained to us exactly what biliary atresia was and talked us through the next steps – they were really on the ball.

Thinking right back to her first week, there were other signs that Croia was not well. Her skin had a prickly rash, and her eyes were red and swollen. She was extremely fussy with milk, even if we changed formula and she would throw up after every bottle. She had gained very little weight in those first two weeks and seemed to sleep very short intervals throughout day and night which is obviously unusual for a newborn baby. Although we shared this on our day five health visit, it was the hemangioma that got the ball rolling and what I believe saved her life. I knew in my gut though that something wasn’t right with her and if her symptoms had continued any longer, we would have taken her to hospital soon after anyway. To new parents that may have concerns that something isn’t right with their newborns, I’d say trust your gut instincts.

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