It’s the ultimate dilemma – choosing which of your children’s lives to save.
Antony Levin faced it when first his daughter Jade and, a year later, his son Keegan, needed a kidney transplant.
The 47-year-old hotel manager from Reading could save one of their lives – but not both.
Jade was only three years old when she collapsed just standing in front of the television.
We took her to the doctor and she was referred to London’s Great Ormond Street Hospital.
She had tests and scans and was diagnosed with a degenerative kidney disease.
The doctors said she had only four or five years to live before her kidneys failed.
It was a huge shock to our family but the news got worse still.
A year later, her older brother Keegan was diagnosed with the same genetic disorder – and, as it’s progressive, with every child you have it gets worse.
Our eldest child Jesse, now 16, didn’t have it at all. Keegan, born two years later, had the disorder but it didn’t show up until Jade was already ill.
Jade, as the third child, was worst affected and it showed in her first.
Doctors said if we had another baby they would be unlikely to survive.
“If you are thinking about it, don’t,” was the advice.
If I hadn’t married my wife Victoria our kids – with different partners – might not have been sick.
It is the combination of our genes that created the genetic mutation.
Both Jade and Keegan had their creatinine levels monitored by Great Ormond Streetin their early years.
The job of the kidneys is to clean blood. You and I might have 20 to 30 points of impurity in our blood, or none.
Jade’s blood was dirty – she had 700 points.
For the first years she was on medication and a very careful diet.
At the beginning she had to eat a lot of the things that kids love most – sweets and cakes.
But towards the end we couldn’t get her to eat them at all. Her body was sick of them.
By August 2010, Jade was on dialysis at the Hippo Ward at GOSH three times a week. It was exhausting for her.
She had a central line fitted to her chest, she couldn’t bathe properly, swim or dophysical activity.
We always knew the day would come when Jade would need a kidney transplant.
I would always have given any child of mine a kidney if it was a match.
But it was a terrible decision to make because we have two children who would both need a kidney, and I only had one to give.
We never knew which child was going to go down first. But Jade came to that place before Keegan.
She was so tired – the way a car stutters with bad petrol. It’s the same with bad blood. It was very difficult to watch.
My wife Vicky found it very, very hard. My way of dealing with it was just to get on with things.
There are lots of different steps to becoming a donor.
One of the key factors is the six antigens we get from our parents. All six of mine matched Jade’s which is very, very rare.
From then on we knew she was going to get my kidney.
I started a four-month programme to get my body ready.
But when we were almost ready to go, the doctors detected hepatitis in my blood from when I had lived in Africa.
There was a small chance Jade would be infected. Ultimately, however, we all felt the match was too good not to take the chance.
On January 4 last year, I was admitted to Guy’s and St Thomas’ hospital in London where they would remove my kidney and send it to Jade at Great Ormond Street.
Afterwards I went to GOSH and Jade was admitted. We then went out for pizza. It was very surreal.
The time has come but you’re trying everything not to talk about it.
I’m going under the knife, Jade is going under the knife, there’s a possibility that being realistic, both of you can die.
You’re just there having a pizza, butterflies in your tummy. I never wanted that meal to finish but it did and I took Jade and Vicky back to GOSH.
There was a terribly difficult goodbye. It was very, very tough.
Afterwards I went to Guy’s and St Thomas’ by myself. The lights were off and all the patients were in bed.
But I was up, fit and healthy, only there to try to save my child’s life.
The next morning I went into theatre and by midday my kidney was at Great Ormond Street where Jade was waiting.
They never know if a kidney will take. The body sees it as a foreign body and rejects it.
The recipient will be on anti-rejection drugs for the rest of their life.
But my kidney started working almost instantly – while Jade was still on the operating table.
Jade’s creatinine levels went from 700 to 200 points in a day. A few days later the level was 50.
Jade also regained consciousness before me. I had a bad reaction to the anaesthetic and didn’t wake up for 12 hours.
Vicky was with Jade, knowing she had made it through, but still not yet sure if I would be OK.
I was in a lot of pain – Jade must have been too but the news that the operation had gone well was wonderful.
It seemed to me it was God’s way of laughing. My body had contributed to making Jade sick but then my body was able to fix her.
Incredibly, Jade was back at school after three months and has never missed a day since.
Every six weeks she still goes to GOSH and she will be on medication for life.
But 17 months on she is full of energy – just like any other healthy, bright 11-year-old.
This moment should be wonderful but it’s bittersweet.
I only had one kidney to give and now Keegan is getting sicker. He is now only a short way off dialysis.
He has had to give up football because every match costs him a day and a half in bed to recover.
How can you choose between your children? Keegan must wonder how it was I could help Jade and not him.
The strain of all of this on our family has been immense. I am still learning to deal with the guilt I feel.
Keegan’s antigens are now on a database and we’re hoping that a match will come up.
GOSH’s new Morgan Stanley Clinical Building opened this week.
It includes the British Kidney Patient Association Children’s Kidney Centre.
When we go with Keegan we know all the wonderful nurses and doctors so well.
It is very hard to watch a second child go through what Jade has and to know you cannot help.
But at the hospital I see families walk out without their kids – and I know I don’t have a problem.
Great Ormond Street Hospital is always a place that makes you count your blessings.