My daughter Isabella was born on April 30 2019. We stayed in hospital for two nights and it was on May 2 that I noticed she was jaundiced and mentioned it to the nurse on the ward. The hospital staff said this was 'normal' and scanned her chest with a machine. The reading showed up too low to show any concern and they said she should wee/poo it out.
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.