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Molly’s Story

Molly-Photo

I’ll admit up front to being biased. But to me, she’s got the face of an (occasionally wicked) angel, and the sharpest sweetest mind I’ve ever seen in a five year old. She’s opinionated and wily and has a massive funnybone and surprisingly good taste in music. All those things make her special, but what makes her really special is her medical situation.

Molly was born early, at 34 weeks, and only weighed 1655g. At the time I thought it was the end of the world, being sent home from hospital without my baby while she stayed in the Special Care Unit. At the time, a month seemed an interminable wait before I could bring home my tiny, funny looking, but apparently healthy baby.

She’d only been home for two weeks when she first became ill. Because she was still so tiny, and it was the middle of winter, I was obsessively taking her temperature every three hours and it seemed to be slightly up. Took her to the doctor, was told to give her Pamol and not to worry. We repeated this scenario every twelve hours for the next day and a half, until I rang the Special Care Unit, feeling sure that things weren’t right, and was told to take her into Starship.

After eight vile hours in Emergency – including a blood test, two lumbar punctures (the first one didn’t work) and a bladder stab (she was too small for a catheter) they admitted her with a urinary tract infection, septicaemia, and suspected meningitis. So much for Pamol. It was two weeks on IV antibiotics for us.

And so to our first stay at Starship. I still clung to hopes of getting out and never seeing another hospital for the rest of her childhood. Hah! It was a weird time – Molly’s my only child and I was deep in the “first child learning curve” – living with her in a tiny room in the infectious ward wasn’t the ideal introduction and I was not, as you can probably imagine, a happy person at that time.

We finally got sent home, on daily antibiotics, and got into some sort of normal life for a few weeks, till the time came for Molly to have an MCU, to see whether she had renal reflux. I took her back to Starship and the test was done amid much angry screaming (on her part I hasten to add, not mine). I watched it on the monitors and just felt the blood drain from my face… I hadnt seen one of these before but I was damn sure the dye wasn’t supposed to flow out to the extremities of the kidneys like that. I remember saying over and over, “What Grade is it? What Grade is it?” to the technicians, who kept murmuring soothingly that the doctor would have to have a look. But I knew the answer. It was Grade Five, both sides – as bad as it could get. That meant an operation for sure.

At six months, Molls had both her ureters re-implanted into her bladder in an attempt to lessen the reflux. I’ve spent a lot of time in hospital with her since then, but that time was one of the worst. I was deep in post-natal depression for starters – although I wouldn’t take any medication because of breast feeding – and for seconds, everything went wrong. After the operation, she seemed fatter to me… it took a couple of days for me to realise that she was swelling up. She had a suprapubic catheter in, but on day two she stopped passing urine. Nothing. The kidneys had temporarily gone on strike. Her room was full of paediatric intensivists, and nephrologists, and the surgeons, and nurses. They needed to get a line into her but couldn’t get one in… they tried, and tried, each session provoking such horrible cries, and finally put a line into a vein on her poor little bald head. I’ll never forget her, lying exhausted over my mother’s shoulder, a poor swollen tiny little creature with an inverted polystyrene coffee cup taped to her head at a tragically rakish angle, so she wouldn’t try to pull the line out. Still makes me cry.

They decided it had to be a central line, into the jugular and down close to her heart, because she was doing so badly. But the anaesthetist on duty wasn’t willing to put her under. The chief anaesthetist had to be called back in, late on Saturday night, to get the line in. And, thank god, her kidneys started up again.

The road to recovery seemed to take forever. Even when she started to get better, she couldn’t sleep, and seemed to be in constant pain whenever she moved. She’d fall asleep on my lap, after feeding, as I sat in the Lazyboy chair the nurses had lent me… but the second I shifted her body would convulse and she’d shriek awake. It took a week of this until one wonderful nurse on the nightshift said that sometimes the suprapubic catheters could cause bladder spasms, and she could give Molly some pain relief for that. Which she did, and at last we got a few hours’ sleep.

Finally we were allowed to go home, although we weren’t allowed to have the central line taken out until a week later… “just in case”. The surgeons seemed satisfied that all would be well.

Four months later we had another MCU, to check the situation before maybe going off antibiotics.

I watched the screen so intently, knowing what I was looking for this time. And dammit – I saw it again. Still Grade Five. Still both sides. The operation was a total failure.

They tried again a few months later, a “teflon sting” at the valves of the ureters. They couldn’t even find the right spot on one side, but did it on the other. Still no help at all.

Her kidney function was tested and came back with forty eight percent overall function, scarring on both sides. And also around this time they started to talk about how small her bladder was. Which seemed quite irrelevant to me at the time – I kind of thought, one problem at a time please lads!!

Things pottered on over the next year or two – daily antibiotics, regular breakthrough infections, the constant juggle to find another antibiotic that she could tolerate (some of them make her vomit horribly). Regular hospital stays when something broke through and we were unlucky enough to treat it with an antibiotic it was resistant to. We were (still are) under the care of the paediatric renal team, Dr Wong and Dr Morris, and got to know them, and a lot of the other doctors and nurses, quite well. Too well – it’s kind of depressing to get admitted to the ward and be greeted by your first name!

Potty training didn’t go well. I used to get so irritated with her – I’m competitive by nature and I couldn’t bear that all the other children her age were managing fine and she couldn’t stay dry for more than an hour. That small bladder thing started to assume more importance in my mind.

On one of our regular visits to Starship, Dr Wong said that the team felt that a bladder augmentation operation might be the way to go. They wanted to do a couple of tests first though – a radiologist in their weekly conference had noted that Molly’s bladder was an odd shape, which might indicate a spinal problem. But they didn’t think that was very likely, since she walked and ran and jumped just fine, and had full bowel control.

The MRI was done under a general. And, our run of luck held true – there was a spinal problem. Her filum – the bottom of the spinal cord – was tethered to her spinal column. That meant surgery. On the spine. Neurosurgery – the mere idea frightened the bejeezus out of me.

The surgery was done when she was three and a half, at Auckland Hospital – Starship didn’t have the facilities at the time. We were told that she would have to stay still, flat on her back, for two days after the operation. I wondered privately if they were mad, or maybe they’d just never seen a three year old before??

That operation was scary. You know how they always have to warn you about everything that could possibly go wrong, before you sign the consent? I couldn’t believe how many things could go wrong on this one, just because it was in the spine. And after our previous experience with the re-implantation – well, you can imagine my paranoia levels.

But the surgeon, Mr Furneaux, was very… reassuring. Partly because he was so “old school” looking… partly because of his fabulous handlebar moustache. And it went well. Molly was angelic about staying still, even when her friends visited she advised them that they would have to come and lie down beside her because she couldn’t sit up. As soon as she got the all clear to sit up, that was it, there was no stopping her. It was a great recovery.

Didn’t help her basic problem though – she had a tiny, high pressure bladder and serious reflux still occurring. Dr Wong explained that it has to be dealt with; as and when her kidneys fail (and they will, it’s just a matter of time) noone will transplant into her system as it is; it would just kill off another kidney.

The team at Starship wanted to do a bladder augmentation using part of her bowel. This will also mean that she loses the ability to void her bladder properly, and will need to catheterise herself daily. They suggested a Mitrofanoff stoma, in which the appendix is used to make a channel from the bladder, up to the navel – that way she could catheterise through the navel, which is a much easier thing for a little girl to achieve than urethral catheterisation.

We talked about it, read about it, talked to the surgeons some more, talked to other surgeons… and just couldn’t feel quite right about it. There are a lot of nasty side effects to using bowel in this way and we were afraid. We sought third opinions locally, and were told – as we suspected – that the best in the field were already in the team at Starship, and if we wanted to have another serious opinion, we’d need to go overseas. A surgeon at the Royal Melbourne Children’s Hospital was recommended.

As luck would have it, a work trip to Melbourne turned up a few weeks later.And the surgeon, Mr Dewan, agreed to see me, armed with Molly’s xrays.

He was great (although I cried hopelessly throughout our meeting – I have more or less NO control over my tear ducts I’m afraid). He agreed that the surgery was very necessary, but disagreed about using bowel. He suggested using one of Molly’s enlarged ureters to enlarge the bladder, and said that he was sure she could learn to catheterise urethrally.

I duly reported back to the team at Starship, enthused by this possibility. And that’s where we are right now… trying to arrange for Mr Dewan to come to Auckland to operate on Molly. If that doesn’t pan out, it’s a trip to Melbourne for us.

So there – it’s been a long story. And that’s only about ten percent of it. As for the future… it’s best not to dwell. I can’t believe how much this whole thing has taught me, and changed me (I used to be relatively timid, but now… let’s just say, medical professionals beware, bolshy mother on the loose).

I’ve learnt…

Doctors aren’t gods. In fact a well informed parent, dealing with a chronic condition day in and day out, can come close to being an equal in their child’s care. Especially when you’re dealing with a sensible, good man like Dr Wong who is willing to let you participate in an informed manner.

Kids are massively adaptable. Things that I originally saw as impossible situations for Molly just get dealt with. Although she does have a SERIOUS needle phobia. (There must be a proper Latin term for that one, I’m sure.)

You shouldn’t pay too much attention to what other people’s children are doing. Your child is your child. Okay, so they’ve managed to get them sleeping through the night/eating their greens/running off to school with no separation anxiety, while your little insomniac lives on crackers and Barbie pasta and cries every morning at nine am. Good on them. But until they’ve been in your shoes, with your child, they can’t possibly see how much you’ve achieved.

Even when you’ve got a child who needs a lot of care, you shouldn’t forget that this is your life too and you need to live it in a way that makes you happy. If that means working (and for me it does), do it. If that means staying at home and doing without some luxuries, do it. You didn’t stop existing as an individual when things went screwy with your child.

And, I think most importantly, I’ve learned that Molly’s life isn’t going to be somehow inferior to anyone else’s just because she has these big problems to deal with. In fact in some ways it’s richer. I’ve always believed that you need darkness to appreciate light, sadness to recognise happiness. Molly’s been brave in ways that most kids her age can’t imagine. She’s screamed and fought as a line was put in and then wiped her tears and said to the resident, “Thank you for doing that quickly.” She’s the coolest five year old I know, and her experiences – and ours – are all part of how she got that way.

(Although, as I said, I am biased.)

Continue reading Molly’s Story

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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!