Daisy was tested for jaundice and we were told she needed to go under a UV light. After 24 hours under the light, her bilirubin levels went down and we were sent home. For two weeks, the midwife came every other day to check her bilirubin levels. They were up and down but never so high that she needed to be re-admitted to hospital. The midwife also did regular checks on her weight because although she was feeding pretty well, she was struggling to put weight on. Once the bilirubin levels went down and Daisy got back to birth weight, the midwife discharged us.

Around three weeks went by and I kept seeing her colour go more and more yellow although only in certain lights. I asked what my partner and my mum thought and they said she looked fine, but I just knew she didn't look a ``normal`` colour. So I took her to my local GP and he said she looks a slight tinge of yellow but seems OK. However he could see that even after three weeks she was still only at birth weight, so he referred us to our local hospital, Bolton Royal, where they did blood tests, scans and urine tests and still couldn't find the cause for the jaundice so they referred us to Leeds Royal Infirmary where they have a specialist liver unit.

At Leeds they did more blood tests and a more in-depth scan of her gall bladder where they saw that something wasn’t quite right. It was at this point that a doctor told us they were 95% certain Daisy had biliary atresia. I didn't know what this was as I'd never heard of it before. It was when the doctor went into details of just how rare it is and how she needed an emergency operation, my heart dropped and me and my partner looked at each other and didn't know what to say. When the doctor left the room, we were silent and didn't know what to do. It didn't kick in for me until my partner left and it was just me and Daisy in the room, I was so worried for her I couldn't help but cry!

The next day Daisy had her Kasai operation which took six hours. Seven days later we were sent home and I am happy to say she is now doing amazingly!

I do think though that the maternity team and health visitors should make parents more aware of watching the colour change in babies’ poos and wees because, even though Daisy isn't my first child, I still didn't have any concerns about this as I didn’t realise it wasn’t right. It was just the colour of her skin being yellow that caught my attention.

However, we still felt something wasn’t right. She was constantly feeding but never seemed settled, she screamed all the time, the jaundice was still there and her poo was chalky. We called the out of hours doctor, but his response was ‘Babies cry. You are feeding her too much’. Our gut instinct was telling us that it was something more, so out of desperation, when Ocean was almost six weeks old, we took her to A&E at our local hospital in Dundee. Although the doctor we saw there thought she seemed fine, he did call in a paediatrician to ask about her jaundice.

The paediatrician knew something wasn’t right. She took bloods and rushed out with the results telling us that it indicated biliary atresia and we didn't have much time to act as we needed to get her to Kings College Hospital in London for surgery. Within a couple of days we were sent to London and Ocean had her Kasai procedure when she was seven weeks old.

Happily, it was successful, and Ocean is now a year old and doing great. She does have a swollen spleen and a risk of portal hypertension but so far things are going well.

Every new parent should know about prolonged jaundice and I would say to any parent who is worried, follow your instinct. If we hadn’t done that, goodness knows where our precious little girl would be now!

We got discharged from the hospital to go home later that day. We then had midwives and health visitors coming out every three days to weigh and check on Isabella as she wasn't gaining any weight. It took her five weeks to get back to her birth weight and throughout this whole time, Isabella was still jaundiced. Every time a health professional came to visit us, they would ask me and my partner if we thought her jaundice was getting better. We said we don't know. When you see your baby every day, it’s a bit difficult to tell (along with becoming new parents and adjusting to your new life).

We got discharged from the midwives’ care when Isabella was just over three weeks old, so it was then down to the health visitors to continue monitoring her. She was still jaundiced but they told us that because she was breastfed, it would take longer to clear and we should put her near the window and take her outside during the day as the daylight would help clear the jaundice.

Isabella was constantly feeding but always unsettled. We started combi feeding with formula so my partner could help with the feeds, but this did mean that she was taking in a lot more than she should for her age.

When Isabella finally regained her birth weight, I was advised to keep a close eye on her weight and to get her weighed regularly. So, when she was six weeks and two days old, I took her to get weighed and this was when things changed.

I asked for help weighing Isabella as it was my first time doing it by myself and I wanted to make sure I was doing it correctly. The lady who assisted me asked me about Isabella’s jaundice and then spoke to her colleague who was a health visitor. She also came over to check and said that, due to Isabella's age, they wanted to refer Isabella for blood tests and that I would get a phone call within a couple of days. It wasn't until the following week that I finally received a call from the hospital. After taking some basic details, the lady on the phone called me back after speaking to a doctor and asked us to come straight in. Little did we know how much was about to change from that day.

Isabella was admitted and after several blood tests and an ultrasound scan the team told us they were concerned that she was showing signs of a rare liver disease called biliary atresia and that she needed to see a specialist. We were referred to Kings College Hospital where they did a further ultrasound and a liver biopsy. We were discharged and told they would be in touch within the next few days with the results, but less than 24 hours after arriving home we got the phone call saying that the biopsy showed a very high chance Isabella had biliary atresia and that we needed to come straight to the hospital as she would be going down for surgery the following day. They explained that the liver biopsy cannot provide a definite answer into the diagnosis, although the chances were high, and that the only way to confirm biliary atresia was to start surgery and check the bile ducts. If it was BA, they would continue with a surgery called the Kasai procedure.

It was biliary atresia, Isabella’s surgery was successful, she was discharged after seven days and was stable for a couple of months. Unfortunately, her condition began to deteriorate and the next few months were a roller coaster of hospital admissions as she had had to contend with ascites, cholangitis, pseudomonas sepsis and portal hypertension. Finally, in January this year she was placed on the transplant list and in March, she received her new liver.

Although Isabella had a number of initial complications, post-transplant, we have now had a few months out of hospital and she is really thriving.

Along our journey with Isabella, we received a lot of information from the CLDF website and from the team and we now know that she should have been referred for a blood test between two and four weeks of age to investigate the causes for her jaundice. Putting her in daylight and breast feeding was never going to clear it. No health professional had ever told us the seriousness of prolonged jaundice and had I known, I would have pushed for investigations much sooner.