I blamed myself so much

Living on the transplant list is an emotional rollercoaster. We are so grateful to Amy for her honest account of her experience with her daughter, Lily, who is now 15.

Lily was born in 2009. I was nervous and scared in any case as I was a first-time mum at the age of 19.  When she was about three weeks old, I remember the health visitor coming round to check her over and she said: “Lily looks a bit jaundiced so to be on the safe side I will send you to the local hospital for blood test and urine sample – it’s better to be safe.” 

So of course we agreed, Lily had her test done and they sent us on our way. The next day I had a phone call asking us to come back in. This time they repeated her bloods and sent us for an ultrasound, which was when they noticed she didn’t have a gall bladder and her bile duct hadn’t developed. We went back to the children’s ward after the scan and the doctor sat myself and my dad down and said “It looks like your daughter has a liver condition called biliary atresia, and we need you to head to London today to Kings for further investigation.”  

My heart sank, so many thoughts went through my mind. Was it my fault? Had I done something wrong?  I blamed myself so much.  I just remember crying and my dad saying “You’re a strong person Amy, you’ve got this, Lily’s in safe hands.”  

When we arrived at Kings, I just thought “OMG something is seriously wrong with my little baby girl”. I felt so scared and alone.  Kings confirmed that Lily did have biliary atresia and needed Kasai surgery which she underwent at six weeks old.  

The Kasai surgery was initially a success, and I returned home to start life with my baby girl. Now I look back and of course I know so much more about childhood liver disease but as a young first– time mum I didn’t know that a baby with dark urine and pale stools was not normal, so I’m forever grateful to my health visitor. 

As time went on, I began to worry about the future. Lily would miss a lot of school due to illness, fatigue, hospital appointments etc and I knew this wasn’t right. Although we knew a transplant was a strong possibility one day, the hospital told me that every child is different and that some even go into adulthood before needing one. So that gave me a lot of hope for her future.  

Around 2016, however, Lily started to get more fatigued, itchy, missed more and more school, and watching her become more ill was just a horrible experience which I wouldn’t wish on anyone .  

 It was on March 28th 2018 that Lily was placed on the waiting list for a liver transplant. By this time, I had two other children with medical needs and my health wasn’t the best  but we stuck together and got though it with the support of each other and our amazing family. When you have a child with a medical condition you need a good support network, so friends, family and in my case, Children’s Liver Disease Foundation are all vital.  

Lily waited two and a half years for her transplant. During that time, every time my phone rang my heart stopped and I felt sick, thinking this could be the call. Unfortunately, we had three calls where we got to Kings to be told the liver was unsuitable. I was getting married in the June of 2019 and was thinking  ‘what happens if we get the call on our wedding day or the night before?’  In the end I made the decision to ask if she could be removed from the list for two days so Lily could be there for my wedding.  She was my flower girl and there was no way I was getting married without my daughter by my side. 

The following year, Covid hit, and my nerves went through the roof. I was so over- protective of all three of my children. Then one Tuesday morning in July 2020 we got the call for a fourth time. We gathered our bags, I hugged my husband and my two boys so tight and cried as I wasn’t sure what was going to happen. 

We got to Kings, had all the tests done and early next morning the doctors came round. My heart was beating so fast and I felt sick to the stomach. I held Lily’s hand so tight and the doctors told us yes  – this time the liver was a match.  I felt all kinds of emotions and just cried. We went straight to theatre and got her all prepared for surgery, I stayed for as long as I could. As they were putting her to sleep, I was fighting back the tears and trying to be strong for both of us, but I just couldn’t anymore and started to cry. Lily squeezed my hand and said “Mum don’t leave me, I’m scared.” I said to her “ I love you so much, you got this”  and that I was so sorry .  

 Six hours later she was out and in recovery and doctors confirmed it had gone well. The road ahead seemed long but it was so good to know the worst part was over, and we could start planning things as a family. Lily’s recovery went well, we were in Kings for just over two weeks. During that time, we made a lovely friendship for life with another mum and her daughter. We bonded over our girls having transplants on the same day and being there to support each other as we had no family around due to all the Covid restrictions.  

Four years later and Lily is still stable.  She has bloods done every three to six months and check- ups every six months. As any parent who has been through this knows, nothing is ever straightforward. Like many teenagers she’s had her struggles with anxiety and other unrelated health problems. 

But I’m so grateful for the chance her transplant has given her. I would advise anyone in our situation to take all the support you can from family and friends and CLDF and I hope that our story is of help to other families who receive this diagnosis.