It is seventeen and a half years since the day I heard the words ‘your baby daughter will need a liver transplant.’ I had been watching her tiny tiny two month old jaundiced (yellow) body over the past few days endure two lumbar punctures and then a thoracentesis or pleural tap. This involves a doctor putting a needle in between human ribs and then into the lining of the lungs to extract unwanted fluid. In our case it happened to be blood, and by the way they drained 60mls from this precious creature’s lungs (her doctor was horrified.) Following this her tiny body had to endure an ERCP (endoscopic retrograde cholangiopancreatography) which confirmed that this little darling had a severe blockage in her common bile duct (a vessel which drains bile from the gallbladder to the intestine) and was suffering from a condition called biliary atresia….a gradual blockage in her common bile duct. Actually I must correct that name as it was actually confirmed by the intensive care staff that in her case she had gone one step further and now had biliary stenosis, the duct had already blocked and the bile was heading backwards into the liver causing major damage and had now lead to a cirrhosis of the liver, scarring and non-functioning of the liver. She was haemorrhaging internally, due to her liver not processing vitamin K which is needed for blood clotting and hence the pleural tap was required to drain the blood from her lungs to enable her to breathe properly. What was going on? I just didn’t understand and at that time, nor did the medical team. She was only brand new, my first born and this just couldn’t be happening. Next came a Kasai operation, she was only two months old. The Kasai operation attempts to reconstruct the bile duct with a loop of intestine. In the Kasai procedure the small intestine is attached to the liver directly so that the bile may drain. This was not successful and transplantation was now our only option. Let me tell you it was the most traumatic time of my life and even though I am a nurse, it scared the hell out of me because I knew what was to come with transplantation. I knew our lives were going to become even more traumatic and unpredictable, if that was possible and it was.
It had been some years earlier whilst doing my nursing training here in Brisbane at the fabulous Mater Misericordiae Hospital, and one evening whilst watching the local news, there in front of me was one of the first paediatric liver transplants. It was a medical and media frenzy. It was incredible. I watched in amazement as the surgical team chatted to the media, one of whom was to later be my darling's doctor here at the marvellous Royal Children’s Hospital, the great and renowned Professor Russell Strong. This is the man who introduced the ‘Brisbane technique’ of liver transplantation and which is now utilised all over the world. Sadly, it was brought to our attention days later through the media again, that the child did not survive. How were those parents coping having been given this amazing sign of hope with an organ donation and now a tragedy in the loss of this precious child? I couldn’t even try to comprehend their anguish. Years on, who could have believed that it would be me in their shoes, though with a far more positive outcome.
So, after consultations with our hepatologist and then cardiologists, gastroenterologists, anaesthetists, radiologists, nutritionists and the list goes on, our only child was cleared and ready for the transplant list. We were informed we would only need to wait six months and she would have her new liver. How wrong they were. With pager in hand (this would alert us if we were non-contactable by phone, that the hospital were trying to get in contact with us and to ring them urgently should it ‘go off’) we lived nearly ten months of hell, watching this child’s condition slip away and eventually I made my feelings clear to the team. We couldn’t wait any longer, their six months was now nearly ten months without any sign of transplant and my child needed help urgently. A week or so later we received that call and after a nine hour operation our gorgeous girl was in recovery, then intensive care and broke the ‘then’ hospital record for a mere ten day stay in hospital post-transplant. It was a miracle. We were so relieved and so proud of her.
On our return home I was to ensure her fourteen different types of medication were administered to her correctly. She was quarantined for about three months due to her lowered immune system. This lowered immune system was medically controlled with very regular blood tests to confirm proper drug levels and thus prevent organ rejection. This left her prone to more infections than others with little resource to fight these infections and so quarantine ensured her ‘clean’ living for the time being.
Her recovery was like clockwork. She ticked every box at every check-up and still does some sixteen years later. Yes she is on medication for the rest of her life but only one; yes she endures blood tests on a regular basis to make sure her liver is working well and that the medication levels are correct; yes she must be alcohol free for life to ensure proper functioning of the liver and prevent any type of damage and yes we are so proud of this amazing and beautiful young woman who is now at university studying Justice and soon to be Laws; yes she is being a typical eighteen year old, challenging but beautiful, healthy and very very loved by all of us including her wonderful sister.
I am sitting here with tears rolling down my eyes as I remember these days as if it was yesterday and when I see on last night’s news that organ donation numbers are diminishing again, I ask why? Is it because everyone needs to have walked in my shoes for the last eighteen years and see what these families go through watching their loved ones suffer and then die because we are too lazy to think about the importance of organ donation and just register online? I thought human nature was better than that and I know it is. The website states 5 760 987 Australians have already beaten you to it; please make sure you are the next one.
To register your wish to be a donor, log on to the below link for Australian residents. If you have problems with this link please go to the Medicare website and register. https://www2.medicareaustralia.gov.au/pext/registerAodr/Pages/DonorRegistration.jsp
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