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Liam’s Story

Liam-Three-MonthsGiven the opportunity to write an article for Kidney Kids about our son Liam and his very eventful life thus far immediately posed one question: How do I even begin to condense the events of the past three years into a readable article? So much has happened in such a short space of time. So here goes…(and I’ll try to be brief!)

Half way through our first (and up until that point, perfect and uneventful) pregnancy saw our world turn upside down in the space of an hour.

The 20 week ultrasound showed that our baby had renal reflux and, of more concern at that point, an unidentifiable mass just above the left kidney, possibly a tumor. So, having breezed into the radiology centre and then staggered out an hour later, feeling shocked and dreadfully afraid, we knew that life would never quite be the same again. All we could do was to take things week by week. So, with lots of tears, lots of concern, lots of focus on positive thinking, lots of scans (9 in total), we got to 36 weeks and following an induced labour, on Waitangi Day 1999 our precious son Liam arrived. And what an arrival it was. The birth was the easy part – the hard part was the crucial weeks and months that followed.

After two days at National Women’s with Liam in an incubator in NICU (at 7 lb 3 oz looking very much the giant amongst all the other premmie babies in the unit) we were transferred to Starship where things began to get pretty scary. Looking back at our first night in Starship I really wonder how we coped. Crying myself to sleep on a mattress on the playroom floor of 24B, 48 hours after giving birth and with a butt full of stitches is certainly not my idea of ideal. The two nights following that Graham and I were put up at Ronald McDonald House which is a wonderful facility. From then on Liam and I were in the same room and Graham was keeping things running at home (and doing a lot of travelling).

It was a long month before we could finally go home and a lot happened in that time. To cut a long story short, the month involved many tests: from blood tests, x-rays, MRI scans, MCU’s and ultrasounds, to DTPA’s and EDTA’s at Auckland’s Nuclear Department (complete with IV line in Liam’s poor little head because they couldn’t get a line anywhere else). Plus numerous cysto-urethroscopies to open up the blocked post-urethral valves that were causing the reflux. Not to mention the endless attempts at trying to breast feed, struggling to keep IV lines open, learning to pick up and cuddle a baby with so many wires and machines attached to him.

Liam-BathingAmidst the foggy turmoil and the desperation to get to grips with just what was going on, we tried hard to ask the right questions, ask enough questions, not ask too many questions, to try to understand the medical side of things. In the end I think we sounded pretty clued up about the whole thing, after having to repeat the details to so many friends and family who were concerned for us all. Looking back to that critical time, it’s no wonder we were looking so haggard at the end of the month when we were finally able to be reunited as a family and live under the same roof.

The diagnosis at that point was still not good. Surgeons had managed to clear the blockage causing the reflux, although still more surgical procedures would follow in the months ahead. Liam had Grade 5 reflux at that point and not a lot of hope that his creatinine level of .29 would ever come down. The big milestone was to reach 6 months of age when Liam would be big enough to go onto dialysis. The next milestone after that was to reach 10 kg when he would be big enough for a transplant, but of course we had such a long way to go at that point. It took him a month to eventually regain his birth weight. Basically he was functioning on a quarter of one kidney. The other one had been so badly damaged in utero that it was doing virtually nothing. To our great relief, the mass was suspected to be a pulmonary sequestration (a piece of lung lobe that had formed in utero and had broken away and was not appearing to be doing any damage). The fact we could stop using that “tumor” word was a real cause for celebration.

We’ve lost count of how many times we’ve been in and out of Starship, mostly for tests and/or surgical procedures, but once with an infection. We are very fortunate to be under a superb team, with Percy Pease in charge of surgical procedures and William Wong our kidney guru (and man of utmost patience when it comes to my endless questions). We’re glad to say that for the time being anyway, visits have now become less frequent and much more relaxed. Our brave little trooper has defied the odds so far and although his reflux is still severe, his creatinine has stabilized for now at .08, he’s ticking along on about a third of normal renal function. It is expected that at some point his remaining kidney function may pack up and dialysis and/or plans for a transplant will become a huge part of our lives, but for the time being, I have to say that nothing is holding him back. He is now three years old, weighs 14 kilos and to look at him you’d never know anything was amiss. He has just as much energy as his peers, if not more, and an abundance of attitude – possibly too much of an attitude at times! We call him our little dynamo. To us he is an absolute miracle. In all honesty I think he has coped better than we have and we’ve always been tremendously proud of him in light of what he’s been through.

Coping is something I found very difficult for a long time. To have given birth to a child with such health problems is something I don’t think I’ll ever get over. Both Liam’s conditions are sporadic, not hereditary, but it didn’t stop me blaming myself in some strange way for what had happened to Liam. The first time poor Elaine visited me in Starship in the early days – to be faced with such a blubbering mess – must have been a bit difficult to deal with. She was such a tremendous help though and was really the first person to talk honestly about what was going on. She was certainly the beginning of my turning point in starting to accept, learn and deal with what was happening. (Thanks Elaine!) It still took a lot of time and healing, lots of crying and after several months of post-natal depression and tons of support from Graham, our families and friends, I started to see my way out of the fog. My early days were horrendous and my head was so horribly bent with everything we had to deal with. I was constantly paranoid that there were things I wasn’t picking up with Liam’s health that I should be. I was so overprotective, I even left coffee group early on several occasions in tears because our baby was “different”. I would panic every time a nappy wasn’t quite as wet as I thought it should be. I would stress out because he wasn’t gaining weight quickly enough. I struggled with normal things that were just part of Liam being a baby and eventually a toddler but I was terrified I would miss something crucial. In a way I felt we were robbed of the luxury of just simply enjoying our boy.

liams-school-dayI once poured my heart out to a friend of mine, who, as quite a spiritual person, answered my question “Why us?” with “Because you can give him what he needs.” I really think she hit the nail on the head with that response. As parents of (how do I put it), a child with compromised health, our highs will be higher and our lows will be lower than parents of (dare I say it) “normal” kids, but our lives will be richer, we will learn more and at the end of the day we will have far, far more to celebrate. And isn’t that what life is all about?

Continue Reading Liams Story

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A big thank your to Lynley, Liams mum, for sharing this with everyone, and for doing such a beautiful job of articulating her experiences and feelings.

I’ve included a poem that I wrote when Liam was very little. Now, I’m no poet as is very plain by the following literary effort. It was written in the small wee hours of several mornings, whilst breast-feeding. I never worked out if I was writing for therapeutic reasons or if it was simply to keep myself awake at 3 o’clock in the morning – (I think a bit of both!) It is very private and I have always been hesitant to show it to people. It is total self-exposure and very raw – I still cry when I read it. I have to admit I was unsure whether or not to include it but if at least one person gets something out of it then it’s worthwhile. It certainly helped me to express and to deal with what I was feeling at the time. (One should never underestimate the therapeutic powers of the written word!)

Looking back over the past three years it really does seem like a bad dream. Devastating to relive it all but empowering to know that we coped with what now seems like the impossible. The dream is not over. It would be unrealistic to even think that. At any point the dream could turn into a nightmare again – that’s never far from our minds. But for now every day is a celebration. We don’t know what lies ahead for Liam. But then nobody on this planet has any idea what is around the corner. Life wouldn’t be life if we knew that. All I know is that in the short while Liam has been with us, we’ve learnt so, so much. We’ve hardened up, learnt a lot about kidneys, can cope far better now with procedures that in the early days made my blood curdle. Liam is certainly an inspiration to all around him. I have so much respect and admiration for the little guy. He is certainly a trooper and has come so much further than anyone expected in the beginning.

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Thanks for making a real difference with your generous support, may your kindness come back to you in many wonderful ways!