Ashleigh's Story: How Liver Disease Changed Our Lives
On August 18th 2017, our beautiful son Benji was welcomed into the world. He was perfect, little and oh so beautiful. My pregnancy was hard, due to all-day-sickness from 4 weeks - 27 weeks combined with migraines that plagued me right until I gave birth.
Other than that it was uneventful. I had a long labour, received an epidural and gave birth at 5.30am. I also ended up with a pretty decent tear.
I was excited to get home as quick as possible with our lovely newborn and start our life as new parents. At first it was uneventful, just the normal newborn issues.
He did have prolonged jaundice but it wasn’t anything too concerning as my husband had an olive complexion so it was hard to tell.
I was struggling a lot with breastfeeding, much to my surprise I absolutely hated it (something I will write about at a later stage). I was always engorged and had an oversupply of milk, which led to some funny looking newborn poops. As I w
as googling what baby poop is supposed to look like (we have all been there right?) I noted a picture of white poop and the big red words, ‘This is an emergency’.
When Benji was two weeks old, I changed his nappy and noticed that the stool was completely white. I remember thinking this was strange, I will see what the next one is like… again it was white.
I recalled the things I had read online and I rang my midwife and told her what was going on. Thinking I was being a neurotic first time mother, I thought it would be completely fine.
As soon as I told her that his stools were white, I got the sense that this was serious, and something could be very wrong. I was calmly but sternly advised to go to my GP immediately. Matt came home from work and we went to our GPs office. She didn’t say much other than he needed an urgent blood test to check his bilirubin levels, as something may be happening. I noticed that on the lab form she wrote her personal mobile number, and URGENT written in large letters.
The memory of feeding my baby and seeing my doctor's number come up on my phone is etched into my mind. Being after-hours I knew this wasn’t good, however I didn’t know that this was a phone call that would change our lives forever. Something was seriously wrong in Benji’s blood and we were required to go to Starship Children’s Hospital immediately. At this stage, I was already in the throes of Post Natal Depression, and I froze, disassociating from reality as I passed the phone to Matt to take the rest of the call. I held my newborn, and gazed at his little yellow face, with the fear looming of what could be wrong. Little did I know that this was just the start of a very long medical journey. We immediately packed a bag and made our way to hospital, informing a few family and friends telling them not to worry and that it would just be a precaution. Once we got to Starship we were put in a little room, and it quickly became chaotic. We met with countless medical staff, nurses and doctors. They put an IV line in his tiny little hand. Took an insane amount of blood and took x-rays, ultrasounds and other tests that I cant remember. We waited for the results. Many new words were thrown at us. Liver disease, Biliary atresia, Birth defects, Genetic conditions. After a quick google, all options were very scary. I looked at our perfect little baby, I couldn’t imagine anything being wrong with him.
As the days went on, we were able to take our little one home and wait for test results. A week later we were called back to meet with the specialist to discuss results. He has Alpha1-Antitripsin Deficiency, causing liver disease. A genetic condition Benji has inherited from me and his dad. In that moment, time stopped as my mind flooded with questions, what ifs, what do we do, what next, why us and an overwhelming feeling of fear. We were told that every child was different, and that most of the time children bounce back and all is okay. That 5% of children with this condition need liver transplant in childhood, but most are fine. Go home, read up on the condition and return to normal and live life. Everything was probably going to be fine. Benji had other ideas, and thought it would be wonderful to fall into the 5% of chronically sick children who ultimately need a liver transplant. I'm just kidding, it's not his fault. He does however like to be unique and write his own medical textbook. Long story short, after a horrendously rocky 2 years, hundreds of tests, and a majority of his life as an inpatient in hospital, Benji received a new healthy piece of his Daddy’s liver on the 24/09/19. A few weeks after his second birthday (which was also spent in hospital). Life was turned upside down again as we now had an immunocompromised child. BUT we could finally… GO HOME.
Fast-forward to today, Benji is ALIVE and well! He is thriving. In full blown toddler mode, embracing his new life as a healthy child. We still have a complicated journey ahead, but this is our new normal. We are so thankful to have him here. He is our miracle. Please spread awareness around the colour of newborn stools. White is NEVER normal and ALWAYS requires medical assessment. If I hadn’t known this already, our story would be very different.