There can be light at the end of the tunnel

A vigilant health visitor made a discovery which triggered a rollercoaster of events for little Croia who spent much of her first year in hospital. Here her parents,  Niamh and Caolan share their story which they want to bring hope to other families.

Our little girl Croía was born on July 19 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 because of Croia’s jaundice, had not been spotted on the 5 day visit. So 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.

When we took her to Blossom Children’s hospital in Craigavon, the nurse practitioner and the doctor who saw her both noticed how jaundice Croia still was at 12 days old.

Shock diagnosis

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 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 it was a rare condition and that 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 underwent the Kasai procedure at three weeks old to try to restore bile flow. Sadly it was unsuccessful, and she was placed on the transplant list in January this year. The majority of Croia’s first year was spent in hospitals, either our local in Blossom or Birmingham Children’s. She suffered from recurring strains of cholangitis and sepsis. Due to failure to thrive, she had a gastric nasal tube inserted. Her tummy grew bigger and bigger each month and she got itchier as the days went on. The itching become unbearable for her. She’d cry out of frustration and lose so much sleep over it. No medicine seemed to help and it was so distressing to see and be unable to make it better for her.

By March this year, Croía had become extremely poorly and 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.

Road to recovery

Recovery wasn’t easy. After two weeks of showing no signs of improvement, further tests revealed that Croía had a perforated bowel which required a second operation to repair it. She developed severe sepsis and two collapsed lungs due to the fluid build- up and strain on her tiny body. Ironically the one organ that stayed strong throughout the entire ordeal was her new liver. Each blood test done daily in PICU showed perfect liver functions, even with everything else that was going on. To me it shows what a perfect match and an amazing gift her new liver was.

Croía managed to pull through it all and five weeks after her transplant we were able to bring our baby home. Since then she has gone from strength to strength. She receives weekly blood tests in order to keep a close eye on her new liver and to adjust medicines if and when needed. She will forever have to be cautious as she is immune suppressed now, so we are learning to adjust life to this new normal and be mindful of all the risks while trying to let her live as normal a life as possible. She is honestly the happiest baby now though, full of life and absolutely thriving. Her first birthday party this summer was a real celebration.

Croia will stay under the care of the team at Birmingham. Dr Gupte who has been her consultant throughout, has flown over numerous times for clinic in the Royal Children’s Hospital in Belfast which saves us having to fly over to Birmingham regularly, although we’ll go over in October for her six month post op check and of course would have to go over if there were any concerns about blood results or possible rejection.

 

Getting help

I first heard of CLDF when we got Croía’s diagnosis. A few doctors had mentioned the Foundation and the fact that there was a lot of helpful information and stories on the website. We’ve since met lots of families in similar situations who have told us how CLDF has helped them.

The Foundation has helped us a lot throughout our journey, particularly in helping us understand Croía’s diagnosis and the different symptoms to look out for! Also hearing other families’ stories and their outcomes was great, as it give us a lot of hope for Croía. It’s why I wanted to share our story now.

To other parents who find themselves in a similar situation, I would say take it one day at a time and take all the help and support being offered to you. Use the CLDF website, find support groups on Facebook, where you can meet other families and share stories or concerns. We found this helped us a lot. Any time we were worried about something new going on with Croia, we would write into the group and 99% of the time there would be someone who dealt with something similar and had the best advice for us in return.

Be open to meeting other families in hospital too. We met so many families throughout our admissions, who we are in daily contact with to this day and who will genuinely be friends for life. Take time to yourself when you can, your child deserves the best version of you.

We are beyond thankful to Croia’s donor and their family for saving our daughter and giving her a second chance at life. We really hope Croía’s story gives hope to those families going through similar circumstances and to let them see that there can be light at the end of the tunnel.  Croía is living proof.. our little miracle girl.