This is the very unusual story of seven year old Mary Jo. Mary Jo has been on the active list for a liver transplant for four years now. She loves watching Mary Poppins, cuddly toys and hip hop dancing. What she can’t stand is her hair being brushed.
This story is told by Mary Jo’s foster mother, Lexie who has been caring for foster children for more than eighteen years.
One day we got a call from the Department of Child Protection (DCP) asking us to take in a little girl who needed a liver transplant. We were told that this little girl was so sick that we were going to have to have our bags packed and ready to leave at a moment’s notice if the call for a transplant were to come through.
Mary Jo came into our family at the beginning of December, four and a half years ago. Everyone around us was as anxious as we were – to care for children was one thing; to have to care for someone who seemed to be so critically ill seemed frightening. We were told that we may get a call for a transplant before Christmas so we had to be packed and ready to go.
That was four and a half years ago and Mary Jo is still waiting for a new liver today. In April in 2012, she had her second liver work up in Sydney (she had had one liver work up as a baby). They told us that they hadn’t had a child who was so sick and yet hadn’t had a transplant, waiting on the list for so long. I was caring for three foster children at that time and so my very supportive husband pitched in to help with the other two while I took Mary Jo to Sydney.
Mary Jo was only three when she came to us, so a lot of her history before that is only based on the information that I have been given by the DCP. Mary Jo has a lovely birth family and she is regularly in touch with them, but circumstances prevent them from caring for such a sick child, so the DCP approached us. Aside from her mum and dad, she has three sisters, a brother, and four grandparents here in Perth. MaryJo visits her parents every week, but sees the rest of the family once a month.
I am told that Mary Jo had her Kasai operation within the first few weeks of her life. Ever since then, doctors have agreed that she would eventually need a liver transplant but fortunately, or unfortunately, Mary Jo has never reached that critical moment yet. Her health seems to drop and then plateau and then drop again. So we continue to wait.
The essence of Mary Jo is a very friendly, happy little girl. She struggles when she is ill but copes amazingly well. The medications have made her little bones very brittle; they ache most of the time and are very painful if she bangs her fingers, arms or legs against anything. I can just tell by watching her when she is feeling a bit under the weather. She has also got clubbing on her fingers and toes – particularly on her big toe. They are so sore that she absolutely loses it if they knock against something. Even holding a pencil is difficult for her. Mary Jo also has a low tolerance to pain with things like peeling off a band-aid or brushing her hair. She likes her hair being brushed but a tangle is her undoing, as are having band-aids taken off. She has so many scans, x-rays, blood tests, infusions and injections all of which she tearfully tolerates, but she has almost no tolerance to tangles and band-aids. All her anger and frustration seems to come out when those two things are being tackled.
It is important to Mary Jo and to us that she fits in at school. We do not want her to be different from other children. She does get the odd remark from kids like, ‘ so where did you get those yellow eyes?’ It hurts and Mar Jo is not quick to retaliate. Her teeth are brown from the medication and some have had to be taken out because the enamel was completely eaten away. She is a tough little girl though and copes with these things as best as she can. There are many children in the school who look after her too and the staff are very caring.
Mary Jo loves hip hop dancing. She began taking classes at the beginning of 2012. Although she can’t keep up with the class all of the time, her enthusiasm is enormous. Anyone who walks through our door is required to watch a few moves at least with Justin Beiber playing in the background.
At bedtime Mary Jo loves being read to. She is not yet a good reader herself because it takes her awhile to process information, but she is certainly getting there. Cuddly toys, watching Mary Poppins and cartoons on television,playing with friends and riding her scooter are her favourite activities.
Mary Jo is also marvellous with babies. I have a little three month old foster baby with me now and Mary Jo has been gushing about the house like little mother hen, taking care of him. She knows how to warm his milk and test the temperature against her skin – I check after her and she is always spot on. She is even eager about changing his dirty nappies!
Mary Jo is an absolute delight to have around the house but I realise that the time for her transplant is not far away. We face another ordeal when we will be asked to take her to Sydney for the operation. I am also concerned about difficulties for MaryJo’s family with her having to go to Sydney for her transplant. Many of her family will not be able to make the trip over to see her whilst she is there, which will be sad for them and for her. When we were there in April she often asked for her mummy or daddy or one of her sisters or brother to come in and visit, and we were only there a week. When she has the transplant she will be there for several weeks and it would be lovely for her, even essential, to be able to have family visiting her.
The doctors say that Mary Jo won’t survive if she doesn’t get a liver transplant soon. Till then we hope and pray that our little girl
22 23 Sam’s mother Tracey tells us about the journey with Sam and his liver transplant.
Sam was born in 2006 on the 12th of March. It was a difficult birth- Sam was born jaundiced and diagnosed with Biliary Atresia soon after birth. None of us had ever heard of this disease and we were shocked and confused.
The only bright aspect of this was that our GP had done his residency under Dr Cathy Mews and so was able to diagnose his biliary atresia straight away.
Sam had to undergo a Kasai operation when he was just under eight weeks old. It worked to a degree for a while. There were many intermittent problems and when Sam wasn’t getting any better, in November that year we were sent for a work up to Westmead.
I have two other children. One of them had just started high school. She was a child that needed my attention a lot. Having to leave her and my son was hard. I could no longer work because I had to care for Sam all the time. With me and Sam away in Sydney, the children coped, but barely.
After the work up, we boarded the flight back to Perth, relieved to be going back home again. On the flight we realised Sam had contracted the Rotavirus while at Westmead. He was exceedingly sick on the flight and we went straight to Princess Margaret Hospital when we landed. At seven months old, Sam was a tiny 5 kilo baby with a distended stomach.
We were discharged home a week later but possibly because of the severity of the infection, his Kasai stopped working. Weekly trips to PMH became a way of life for us.
One night we got the ‘call’ to say that they had found a liver for Sam. We boarded the midnight flight. As soon as we landed, my mobile went off. It was a call from the Transplant team at Westmead letting us know that the liver they had found was not a good match for Sam. We would need to return to Perth. But Sam was already so sick, we could not return on the next flight. He was in hospital for another couple of days before we could bring him back.
Within a couple of weeks of our return we got another call on a Sunday morning. A liver had become available. I was on the internet looking for flights when I got yet another call. There wasn’t enough time for us to get there in time for the transplant. Another false alarm.
As Sam became progressively sicker, Cathy contemplated sending us to Sydney to wait for a liver transplant. While he was getting an albumin infusion, Cathy told me that it would be best for us to go to Westmead and wait for a liver in Sydney. By this time, I was an utter mess and was not coping well at all. I had no idea how much longer I could get by without crumbling.
That night, we got another phone call informing us that a liver had become available.
We were in Sydney for nearly four months. But our troubles had not ended. Sam’s transplant was followed by multiple complications. Post-surgery, the doctors realised that he had a blood clot and there was no blood supply to his new bile duct. His bile duct is compromised a lot now and he has had recurrent infections which mean more intensive care and isolation.
Knowing that his liver transplant wasn’t classified as a hundred percent successful, we realise that Sam may need another transplant in the future. Westmead had predicted 2 -5 years before he would need another transplant. In May 2012 he was five years post transplant and still doing well so that is great. He has had a couple of stents put in and each time there have been complications with leaks and infections.
While both PMH and Westmead have provided excellent care for Sam, having to move interstate with a seriously sick child, leaving my other two children behind was hard. We live with the hope that there will one day be a children’s liver unit in Perth, so that children like Sam do not have to go through distressing times away from their family support network.
Golden ringlets frame an angelic face. Not so angelic sometimes, says mum Jo. It is mid- morning- nap- time when I come to visit Frankie’s home to have a chat with his mother, Joanne Inzalaco. She is hurrying to put Frankie in his cot before a tantrum comes on full force. I can hear Frankie making little complaining noises as Jo comes out to make us a cup of coffee and we settle down for a chat. She has been through some traumatic times with Frankie and this is her story.
Two random incidences when strangers came up to us, kicked off what was to become our association with hospitals in Perth. The first time I had any inkling that something was wrong with Frankie was when I was at a local cafe. He was ten days old. A lady stopped at my table and said that he looked a bit yellow. I shrugged them off saying that doctors had told us his jaundice would disappear in a few days. Frankie was my third child and I felt I knew all there was to know about being a mother.
The second incident happened when my mother (who had come over from the United Kingdom) was out shopping with my aunt and Frankie was with them. A lady came up and asked my mum how old the baby was. When my mother told her, she said, ‘that baby is very jaundiced for 5 weeks old’.
Frankie may have been yellow, but somehow I didn’t really notice. Neither did my friends when they came visiting. Nobody had told me to look for pale stools or dark yellow urine. But when Mum and my aunt told me about the lady in the shopping centre, the penny dropped. I took him straight away to Joondalup hospital. The doctor took one look at Frankie’s yellow skin then felt his liver and suspected the worst.
While tests had been performed by the GP soon after Frankie’s birth, we were always told that the jaundice would disappear eventually. Health nurses had asked me whether Frankie was passing stools and urine regularly, but no one really told me what to look for in them. I think that was critical in the diagnosis timeline.
Without ado we were sent to Princess Margaret Hospital (PMH) by ambulance from Joondalup. We met Dr Ravi who told us that Frankie would need a life saving Kasai operation right away. He was one day short of the mandatory six weeks age requirement for a Kasai to be performed on a new born.
At first they said, we would have to go to the Eastern States to have the surgery. This was devastating news for us because we had two other children, only slightly older than Frankie and my husband would not have been able to accompany me. We had no family in Sydney. However, fortunately for us they decided to do the Kasai here in Perth. In fact he was the first Kasai done after a long interval here in W.A.
The support group at PMH has been fantastic. Without them, our journey would have been that much harder. Frankie is not currently on the waitlist for a liver transplant. His numbers have been looking good although he has had minor ups and downs. If we did ever have to take that route we would have to go over East, which would have a huge impact on our family and Frankie himself.