24 Aug Liam’s Story
Given 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.
Amidst 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.
I 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?
Today I said Goodbye to Liam.
Today I kissed him on his left cheek and walked away. As I left, I turned to look at him again. He gave me one of his gorgeous little sideways smirky smiles as if to say… This is cool, Mum. I’ll be okay.
I made it to the car without crying (well, okay I had tears in my eyes and a lump in my throat but technically I wasn’t blubbering!).
When I got to the car and strapped Bridget into her carseat, I realised that I still had Liam’s sunhat in my handbag. So I loaded Bridget up with books, grabbed the sunhat and legged it the short distance back to the classroom. I snuck into the bag room and popped the hat into the pocket of his schoolbag.
As I snuck past the classroom again I couldn’t help myself. I glanced in through the window and saw Liam sitting in his little chair, totally engrossed in something. His back was towards me but I knew that his little tongue would’ve been poking out, deep in concentration.
He was okay. Quite happy. Our precious wee boy was happy. His very first day of school and it went without a hitch.
Man I was proud of him. Our little clingy vulnerable young boy was so totally cool about letting me leave him in a room of people he hardly knew for the whole day. Amazing. What a positive start to a very exciting journey.
He’d had an amazing few days. Firstly, the big send off at preschool on his last day. The teachers at Liam’s preschool were absolutely fantastic and always made such a special deal for the kids last day. He had been so excited and had lapped up all the attention. As we drove out of the carpark he had sighed and said (in such a grown up voice) “I’m really going to miss them, Mum”.
Then his 5th birthday and the big party, with the visiting clown and 17 of his kiddy friends and relatives, (plus I don’t know how many adults, I didn’t count). Again, he thrived on the attention. As I watched him laughing and playing and giving the clown plenty of lip, (even dropping his own little funnies into the clown’s show), I couldn’t help but reflect on the last few years. Mainly how damn fast those five years had gone, but more importantly how far Liam had come. Not just in the medical sense.That in itself has been a rocky road at times and yes, he has astounded the professionals and has defied the odds. But more so in the emotional developments over the past two years or so. There was absolutely no way on this planet that Liam would’ve coped with a big party a year ago. His three and four year old phases were a very different story.
Looking back, Liam was, at times, a very imbalanced and unhappy child. The “terrific two” phase had started at around eighteen months, as with most young folk. But two came and went and then three, then four and the rage and frustration still hadn’t passed. To put it mildly, his behaviour was a challenge and, at times, nearly blew the family apart. His tantrums would blow the roof off the house and could last up to an hour. We tried everything… walking away, holding the door closed (while he destroyed his room and himself), bach flower drops, cranial osteopathy, a technique called “holding time”, even smacking. Nothing could stop the fury and at times it was all too much to bear. How could this child who came from a balanced and “normal” family, with so much love around him, be so disturbed and unhappy? This gorgeous, well-behaved, timid little guy who was so sweet and quiet at preschool was a whirlwind at home and we couldn’t understand why.
At long last we worked it out. I cant believe we could’ve been so dumb. Of course Liam was unhappy. Of course he hated us. The poor kid couldn’t even trust his own Mum and Dad. Just when he thought his little world was safe and secure, there we were in at Starship Hospital again, and there we were, his own Mummy and Daddy, the two people he loved and trusted most in the whole world, helping to hold him down while things were forced into him, onto him and up him. Of all the violation and intrusion in hospital, the most violation he suffered was our violation of his trust in us. I can’t believe we didn’t pick that up sooner. How dumb could we be? It transpired that the more serious procedures and surgery, (the ones that required a GA) he breezed through. Recovery was rapid, physically. And psychologically, it was like nothing had ever happened.
The lesser procedures however, were a very different story. The tests and procedures that involved Liam remaining conscious, or sedated, brought out the most disturbing behaviour. Often for a few nights after the procedure Liam would awaken, screaming and thrashing. When I would go into his room to help calm him down, he would hit out at me and would be totally inconsolable. His behaviour would suddenly shift over the following weeks and sometimes months. It was like he wanted control over everything. Everything had to go his way or else. The slightest little thing going wrong could spark the marathon tantrums again. He seemed so angry; he seemed to hate the world and worst of all, us, his family.
I think that, despite it all, though, we managed it reasonably successfully. In terms of how to prepare Liam for tests and procedures, we kept it simple, fairly short notice and very light hearted.
Liam’s big surgical success was a “Teflon Sting” procedure, when he was just over three and a half. His reflux had been at grade five since birth and finally our surgeon and specialist had come to an agreement to go ahead with surgery. Only a couple of days before surgery was due, I talked about it with Liam. I explained that he was going into Starship and was going to have a very special sleep. And while he was having a special sleep, Mr Pease (his surgeon) was going to have a bit of a chat to Liam’s “sneaky wees” – which had been our special name for the reflux – because the sneaky wees were still being a bit naughty and were still sneaking up into his tummy. Liam’s response to that was “Will Mr Pease growl at my sneaky wees Mummy?” My response to that was, “Yes, I think he will have to”. On the day Liam was amazing. He skipped through the Domain on our way to the hospital. We were running a little ahead of time so we stopped for a look at the Winter Garden. On our way back out Liam skipped on ahead towards Starship and said to us with great enthusiasm ” Come on Mum, come on Dad, lets go and get my sneaky wees fixed”. It blew us away.
That wasn’t the only thing that blew us away. Surgery went well. Liam came out of recovery quite unaffected (after sleeping off the anaesthetic for three whole hours). His legs were still a bit wobbly even after we got home because of the epidural he’d had. But he bounced back immediately. Life went on as usual. No worries. The one thing that we did notice almost immediately was the totally dry undies. Liam had done very well with toilet training, despite the reflux, but was still leaking and dribbling before actually realising he had to go. He was a bit tender for a day or so after the surgery, as youd expect, but suddenly he was totally dry by day and seemed to have much more definite signals to “go right now”. (The night-time dryness didnt eventuate until much later, at about four and a half. But he got there, that was the main thing).
The dreaded MCU followed about six weeks after surgery. As usual we battled to hold him down to force the Medazilam down his throat. We thought we had got most of it down, but that evening Liam had told me who had been in the room at the time, what colour clothes the two hospital staff had been wearing, and he explained that the reason he refused to pee was because he thought he was going to pee on the bed. (So that kind of answered our question regarding how much sedative we managed to get into him!)
Therefore the MCU had been carried out fully conscious. Needless to say we had more night time thrashing and disturbing behaviour to follow in the weeks ahead, as we did with a DTPA test around that time.
The results of the MCU were absolutely astonishing. Because Liam had flatly refused to empty his bladder, the crew then pumped a second bag of fluid into him until he was up like a balloon. The little trooper still held on until one of the ladies showed him a pot which she pretended to put underneath him for him to pee into. Then it was all on. He peed and he peed and he peed and he peed. He was still peeing when I heard one of the ladies say “Well, all looks good, no reflux showing today”. I think my reply to that was “Huh?????? What do you mean no reflux, it was Grade 5?” To be honest I thought they were having me on. The poor ladies – I kept making them repeat the “no reflux” comment over and over again. Im sure they thought I was either deaf or stupid! The number of times Liam has had to go through an MCU test, showing Grade 5 severity, and we’ve left the room with very stiff upper lips and the brave faces. This time was different. The news was fantastic – he was showing no reflux whatsoever – and I left in a blubbering, crumpled heap. How ironic is that????
In the following January, just before his fourth birthday, still amidst some difficult behaviour following the MCU, we had to take him back in for a CT scan. For this a very quick GA was booked (much to our relief). My explanation to Liam for this one was, “We are going to Starship and you are going to have a special sleep and while you are asleep you are going to have a special photo taken of your tummy.” (I had gone on to explain it was so that the doctors could have a little check to see that the sneaky wees were still behaving themselves. This of course was not true as the CT scan was to check the pulmonary sequestration above Liam’s left adrenal gland, but for Liam’s understanding I thought the sneaky wees notion was better.) His response to that was “Mummy, how is my tummy going to smile for the camera? Can we draw a smiley face on my tummy for the photo?” And so we did. It was a huge big smiley face, the tummy button was the nose. It was gorgeous. The only problem was that I forgot to mention it to the staff, so they may have got a fright when they lifted Liam’s shirt!! And once again, our theory was proved correct. A general anaesthetic so no dramatic shift in behaviour. (Liam was discharged from the surgical team a little later in the year as Mr Pease had decided by that stage that the “mass” could remain where it was without causing any further problems. No further action was deemed necessary. A huge relief as you can imagine.)
Our behaviour theory has been confirmed yet again over the past year. Liam has had very little hospital activity. A couple of check ups and a couple of blood tests. That has been about it. And the difference in his outlook and disposition has been phenomenal. Built into the equation, of course, is a bit of maturity. But what a happy, keen, confident little guy he’s turning out to be. He’s a different kid. Looking back, it sure has been a struggle at times but it has been so worth it.
So here we are. Liam is five. We didn’t know in the early days if he would make it to one, let alone five. He continues to tick along on a third of normal renal function. He has been off his antibiotics for over a year now (with no UTI problems). His bloods were okay at the last check. Creatinine is about twice the level it should be but it remains stable which is the main thing. We are so incredibly proud of our little miracle man. Things may still turn to custard further down the track, we never forget that. But for now he is kickin ass. He makes us so proud and thankful every day.
I can honestly say that the last five years has seemed like five minutes in some ways. I tell you, I am not going to let myself blink for the next five minutes because, before we know it, he’ll be wanting to borrow the car!!