I donated a kidney to my six-year-old son after his stopped working

Doctors told us that Matti’s kidneys would ultimately fail or grow cancerous tumours (Picture: Marjorie Carrington)

Getting the news that your newborn son will eventually need a kidney transplant is something that no new parent wants to hear.

So, when doctors told me and my husband Stefan that our 11-day-old son, Matti, had a rare genetic condition affecting his kidneys and his ability to urinate, we were in complete shock. After having a normal pregnancy and two healthy children before him, this came to us out of the blue. 

Though he was born in Frimley Park Hospital in Surrey, we were transferred to the more specialised Southampton Hospital on the sixth day, where doctors told us that Matti’s kidneys would ultimately fail or grow cancerous tumours, known as Wilms tumour.

One of us would probably need to provide a kidney for him when the time came – and at that stage, it looked as if we were both eligible. This situation could have completely thrown us, but Stefan and I decided to take it as it comes: not look too far ahead and just deal with the here and now, and with each stage as it happened.

From the beginning, doctors were concentrating on keeping his blood levels stable and giving him medicine to correct them. We were in the hospital for a month, and then we’d have to come back quite often – not the easiest task when we lived about an hour away. 

But, we got on with it and gradually, our visits got less and less frequent: down to every four to six weeks for the clinic, and every 12 weeks for an ultrasound of the kidneys to check that no tumours had grown. Between the ages of 18 months and four, Matti was stable and we were able to carry on as normal with the help of medication and clinic visits.

In terms of his diet, we’ve always had to watch how much salt and protein he had. But in most ways, Matti was your regular, happy, lively little boy who loves sausages and ice cream, just like his siblings. 

In hindsight, I really cherish those times – because things took a major turn from December 2020 to January 2021. Without warning, the function of Matti’s kidneys went downhill very quickly, before failing completely – what the doctors warned us of at birth, five years before. It was time to start thinking about the transplant.

We got admitted to the hospital and he had to go straight onto peritoneal dialysis – treatment through the tummy, rather than through the blood – meaning that we could do it from home, rather than needing to come back to the hospital three or four times a week. 

Matti had to be on the machine for around 11 hours every night. Initially, we hoped dialysis would only be a couple of months until the kidney transplant happened, but at the time, Covid restrictions meant that the living donor organ transplants programme was put on hold – we had no idea how long things would be like this.

Matti had peritoneal dialysis – treatment through the tummy, rather than through the blood (Picture: Marjorie Carrington)

In the meantime, Matti’s kidneys were completely removed. Since they weren’t doing their job anyway, keeping them there only meant the unnecessary risk of tumours growing. 

With no kidneys, it meant that Matti could no longer process food the same way, or pass urine – so, he could only have a certain amount of fluid during the day as there was no way of it coming out. If there was too much fluid in his body, he’d puff up like a balloon – not good. 

It was tough trying to keep track of how much water he could take in. He was limited to 600ml a day, including anything like gravy, custard or even some of his medicine. The restriction felt especially hard over the summer, but we dealt with it by giving him 10ml ice cubes.

In general, Matti was pretty accepting of this – but there were moments when, understandably, he hated it. It was an adjustment for the rest of the family too – we couldn’t all restrict ourselves like that, but we couldn’t eat treats like chocolate in front of him, knowing that he was on a low phosphate diet and wasn’t able to eat dairy.

We’re lucky that his siblings were pretty accepting of it all – there were moments where we all got frustrated, I can’t deny. But it’s been a big family team effort, this whole thing. We’ve all had to work at it together.

We’re lucky that his siblings were pretty accepting of it all (Picture: Marjorie Carrington)

Initially, Stefan and I had decided that he’d be the one to give Matti a kidney – that way, I’d be able to be up and mobile to take care of the family. 

He got to the final stages of the pre-transplant workup, but we discovered that Stefan’s kidneys were different sizes, and living with just the smaller one wouldn’t have been any good for either of them, long-term. So, my husband was rejected, leaving me to be considered. 

I was nervous that we’d discover something that wouldn’t work with me too – because, where would that leave us then? But, thankfully, I started my workup in July and it went quickly and successfully. I was a match; the transplant could go ahead.

On October 26, 2021, I was admitted to Guy’s Hospital in London, while Stefan and Matti were in Evelina Children’s Hospital about two miles away. The surgeons took a kidney out of me and then it was biked to Matti’s hospital. 

I can barely explain the relief I felt when I woke up, four hours after going under, to hear that the kidney had made it over to Matti safely – and then, the next day, we learned that the transplant had been successful. 

For the first time in months, he was eating properly again, rather than unexciting foods like plain pasta with a touch of tomato sauce. He was so excited to eat sausages, cheese, ice cream – all the things you might take for granted, but were forbidden when he didn’t have kidneys.

To see him being able to have chocolate was wonderful, after so long without it. Of course, there’s a lot of medications straight after transplant, so having something sweet made things better.

Tonya and other playworkers have been invaluable (Picture: Marjorie Carrington)

Since February, his treatments have been pretty relentless. Though he’s used to having blood tests, having them more often than usual was really traumatic for him, and for me to watch, too. 

One thing that really helped was having a play specialist – someone who’d come and distract him from the pain, and bring a bit of fun to what can be a tedious day at best. 

Tonya is a play specialist that we’ve got along with particularly well. Playrooms have been closed during the pandemic because of the risk of children picking something up from each other while their immune systems are compromised – so Matti hasn’t been able to socialise with other kids.

But Tonya and other playworkers have been invaluable as people who are kind, friendly and trusted adults in a sensitive situation – organising activities or bringing new toys for him to play with, or even occupying him so that I can grab a coffee and a break. 

Through the hospital, we nominated Tonya for an award from Starlight, a national charity that uses the power of play to make the experience of illness and hospital treatment better for children and their families – and she won! We were all so excited for her.

After all that we’ve been through as a family, I’m happy that we’ve now reached the next stage for Matti’s health.

Transplant is not a cure but a great treatment that should give him a much better quality of life with the right care and medication. He will need another transplant one day but we’re hoping this kidney will last a good few years. 

Matti and I are currently living away from the family home so that we can be right by the hospital for his tests, three times a week. Our hope is that we’ll all be reunited for Christmas. 

There have been times where I’ve wanted to throw my hands up and say ‘I can’t do this’ – but with the support of great doctors, nurses and the play support staff, Matti and our family have been able to get through it all. 

More than half of all UK hospitals are without the budget or resources to make play happen for the children in their care. Play is vital for children who are trying to cope with serious illness. This Christmas, help Starlight reach the hospitals and children who need it most at starlight.org.uk/timetoplay

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

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