Kelly wasn’t initially worried when her daughter was jaundiced as it’s so common in babies. But her midwife knew it shouldn’t last.
We weren’t overly concerned when our baby daughter, Grace, had jaundice. We have an older child, Joe who is 13 and I knew that jaundice was common in babies. The midwife advised more sunshine vitamin D and this made sense to us.
However, Grace’s jaundice got gradually worse, not better and it wasn’t just her skin – it was the whites of her eyes that were yellow. Also her stools were very pale and her urine was dark. Fortunately for us, our midwife knew that the jaundice should have cleared by four weeks so she advised us to go to our local jaundice clinic. The clinic did a blood test which showed that here bilirubin and liver enzyme levels were very high and we were referred to Kings.
Kelly and Grace
Kings did more tests and an ultrasound and found that her gallbladder had not formed properly. They told us it was more than likely Grace had biliary atresia. As she was six weeks old by then, the consultants explained that she needed the Kasai procedure there and then as once she was over eight weeks old it was less likely to be successful.
The hospital also told us about CLDF – they gave us leaflets and showed us the website which has been a really useful source of information. While we were at Kings we also met other families whose children have liver disease, some in different situations to ours, and it was very humbling. We’ve done fundraising for CLDF on Facebook and Instagram since because we feel everyone in that situation needs to know there is support there for them.
Grace after her Kasai
To date, it appears that Grace’s Kasai was a success. She’s now a year old, thriving and people who meet us are surprised to know about her tough first few weeks.
We’re lucky that our midwife recognised the danger signs and advised us to request further investigation. Jaundice in newborn babies may be common but I now know that prolonged jaundice isn’t and I want every new mum to be aware of that fact.
Grace shortly after her Kasai with her best friend Bo the Bulldog
Grace today
My Grandaughter had this, again a health visitor picked it up very quickley so she was operated on early.
She’s now 12.
Thank you Kings
This is a beautiful story for lovely Grace. My daughter wasn’t born with jaundice but developed it at 6 weeks progressively and Kasai at 8 weeks at amazing Kings. Harriet will be one this month. She has had sepsis and 2 infections since the Kasai and is a bit jaundice, but we hope she can hang onto her liver as long as possible. Babies like Garce and Harriet humble us all with their resilience and strength.
Thank you for sharing Graces story and also yours.