When my beloved little sister asked me to donate a kidney to her, I said no. Now she's dead, the guilt will never leave me... But read my story and tell me you wouldn't have done the same
When I was ten and my younger sister was eight, we decided to become ‘blood sisters’.
The pair of us were so close that it felt entirely natural to scratch our wrists with a penknife and rub them together, swearing that we’d put each other first for the rest of time.
That was certainly how it worked while we were growing up.
I protected Philippa from bullies and, when we were teenagers, she covered for me when I sneaked off to meet a boy I had met at our youth club.
So when, later in life, doctors told Philippa she might need a kidney transplant, and she asked me to be her donor, you would assume I agreed without hesitation.
Once upon a time, I would have assumed the same.
After all, you think you know what you’d do if someone you loved dearly asked for help to save their health – maybe even their life. And kidney donation is almost routine these days, with around 1,000 people becoming living donors in the UK every year, usually to friends or family members.
And yet, when I was put to the test, I said ‘No’. Did I make the right decision? You will have to read on and judge for yourself.
Tess, pictured right, and her sister Philippa were 'so close' when they were younger
The pair decided to become 'blood sisters' when Tess, pictured left, was ten and Philippa was eight, swearing to put one another first for the rest of time
But even though I had a very good reason, I don’t think I’ll ever fully come to terms with my choice – particularly since Philippa died four years ago at the heartbreakingly young age of 53.
Despite our childhood closeness, my relationship with Philly, as I called her, was incredibly complicated. She was both my best friend and the person who let me down the most.
Philly was born when I was two and she was always sickly; in Call The Midwife parlance, she suffered from ‘failure to thrive’. Her lungs were weak and by the time she was six, she’d had pneumonia more than a dozen times. She also had only one fully working kidney.
Part of the reason Philly and I were incredibly close was because our mother Jane suffered terrible post-natal depression after Philly was born, leaving me in a quasi-maternal role.
Even aged two, I tried to look after her. According to my father, when Philly was a baby I once fed her a bar of cooking chocolate because she was hungry.
And with Philly in and out of hospital for months at a time, there was yet more reason to feel protective of her.
Our bond continued to strengthen as the years went by, during which my mother gave birth to our little brother when I was eight and Philly was six. At school, Philly’s frequent absences and emotional vulnerability made her a target, and I appointed myself her fiercest protector, squaring up to anyone who dared mock her or leave her out.
But in our teens, my sister and I took different paths.
Her moods grew more erratic, and she made reckless, rebellious decisions that got her into trouble with our parents.
While at 18 I went off to study at Oxford, Philly left school at 16 and embarked on an affair with a married man, before rebounding into a doomed marriage with a boy she had known only weeks. It lasted less than a year.
It was hard not to disapprove as she ricocheted heedlessly from one relationship to another.
By the age of 22 she’d had three children by three different fathers – all in less than three years. Over the next chaotic decade, two more marriages and divorces followed. She drank and took drugs, and eventually her children – then aged 12, 11 and ten – were taken into care for a time.
Meanwhile, I pursued a career as a television news producer and writer, before finally settling in the US with my second husband Erik when I was 35.
I gave birth to our daughter Lily, now 23, and we lived as a happy family of five with my sons from my first marriage, Henry, 31, and Matt, 28.
I didn’t blame my sister for being unlucky in love, and sympathised immensely with her divorces.
I knew from personal experience how hard they can be, given the acrimonious ending of my own first marriage after my husband was unfaithful.
Philly was born when Tess was two and she was always sickly – her lungs were weak and she had only one fully working kidney
While Tess went off to study at Oxford, Philly left school at 16 and embarked on an affair with a married man, before rebounding into a doomed marriage
Yet Philly and I had nothing in common any more, and when we met it increasingly felt like talking to a stranger. Inevitably, we drifted apart.
I watched from afar as her life spun out of control. Though I bailed her out financially many times, she never managed to get her life back on track. She even tried to overdose several times.
She was her own worst enemy, smoking and drinking too much; doctors told her she’d kill herself if she didn’t stop. She carried on regardless – and watching her do it was an agony I didn’t know how to express. Part of me was furious. Part of me just grieved.
Eventually, her sole working kidney started to fail and when, in late 2007, when she was 39, she was told she might need a transplant, naturally she turned to me. You might think, even if your relationship has become strained, that when faced with such a request from a sibling there would be no option but to say yes. Yet after a great deal of soul-searching, I told her I wouldn’t give her one of mine.
Did I judge her for her lifestyle and the fact that her health issues were exacerbated by her behaviour?
Yes, I can’t deny that was a factor. And while the long-term risks of kidney donation – which can include elevated blood pressure – are considered very low, I couldn’t help but feel an ugly resentment; why should I put my own health at risk for someone who had shown so little care for her own?
But it was more complicated than that.
My daughter Lily, then just six, had just been diagnosed with type 1 diabetes. Even though it’s a manageable condition these days, it’s irreversible, and I was sick with worry about her.
It didn’t help that one of my favourite movies is Steel Magnolias, in which Julia Roberts plays a woman who has type 1 diabetes – and goes on to die from kidney failure.
That movie was all I could think about as Erik and I were taught how to give Lily insulin injections and prick her fingers every few hours to test her blood sugar.
Lily was very brave, dealing with this dramatic change to her life without fuss, but it took a lot of getting used to for all of us.
We had to count the carbohydrates in every morsel of food or drink she consumed, and do complex calculations to work out how much insulin to give her with each meal. A single mistake could be fatal.
The whole family – even the boys, then aged 14 and 11 – learned how to give Lily an emergency injection of glucose if she fell into a diabetic coma, which happens when someone’s blood sugar falls too low.
Every aspect of life became more complicated: sleepovers, trips to the water park, birthday parties. Anyone responsible for her for even a short time had to know how to manage her diabetes.
So when my sister asked me if I would consider giving her a kidney, it could not have come at a worse time.
I was furious with her for ruining her own health when my sweet daughter’s had been damaged through no fault of her own.
And while, yes, Steel Magnolias was just a movie, Lily’s doctors told me that kidney disease is a very real risk for people with type 1 diabetes.
Lily was young but there was a chance, albeit small, that one day she would need a kidney transplant. And if I donated one to my sister, I wouldn’t be able to help my child should the need arise. For weeks, I wrestled with the decision. I was weighing my sister’s imminent need against a theoretical crisis my daughter might never face.
But my sister had made her own bed. She had never had great health, but she’d made it so much worse through her lifestyle choices. Lily, on the other hand, had never done anything to deserve her diabetes. As her mother, I had to put her first.
So after many sleepless nights, I told Philly ‘No’. I just couldn’t risk it.
When I explained why, she said she completely understood. Despite everything she was, at heart, the kindest, most empathetic person I have ever met.
What I didn’t know at the time was that, in addition to all her other health problems, she also had bipolar disorder, a chronic mental health condition characterised by extreme mood swings.
She wasn’t diagnosed until several years later, in her early 40s. But one of the symptoms of bipolar disorder is poor judgment and risky behaviour, so sufferers often have a chaotic sexual and romantic life.
Things reached breaking point with the sudden death of Tess and Philippa's brother in 2015 (pictured, the three siblings aged 12, ten and four)
If I had known how much her illness affected her life choices, maybe I’d have been more sympathetic. But as it was, already distanced, things between us continued to deteriorate. On the rare occasions we talked on the phone, she seemed drunk or high, and we would have rambling conversations she wouldn’t remember five minutes later.
I confess that when Philly first told me about her bipolar diagnosis I didn’t believe her. I thought she was just saying it to make excuses for her own bad behaviour. I was simply too raw with grief over everything that had happened – and too angry – to find the compassion I wish I’d had.
Things reached breaking point with the sudden death of our little brother in 2015, aged just 40, after suffering a cardiac arrest.
With both our parents dead by this point, I felt bitterly let down when Philly refused to get involved with everything that needed doing in the aftermath and I cut contact with her for four years.
Later, I discovered that at the time of those rambling phone calls she had become dependent on morphine, which she was prescribed for agonising hip pain after falling down a flight of stairs.
No wonder she couldn’t remember our conversations. No wonder she seemed so flaky.
However, she didn’t tell me any of this until we reconnected in 2019, when I was 52 and she was 50.
Tess now says she now wishes she had given her sister 'the show of faith she needed' back when Philly asked for the kidney – adding she is unsure if the 'guilt over that will ever leave'
By now, she had finally come off the morphine, having eventually gone cold turkey after seven years because NHS support to taper off kept failing to materialise. She had got her bipolar disorder under control too, with the help of regular medication.
She was like a different person: funny, earthy, kind and smart. The sister I remembered from our childhood.
We spoke every single week, and exchanged messages on Facebook all the time.
Her health was still never good, but she managed to keep going, although she frequently spent long spells in hospital with pneumonia, anaemia and a host of other issues.
Her kidney somehow still functioned, although never very well, and she got one urinary infection after another.
Lily’s diabetes was well under control by now, and as she entered her teens she got an insulin pump, which replaced the need for injections.
At this point, I told Philly that if she really needed one of my kidneys, I’d give it to her.
But she refused to consider it, saying I still had to put Lily first.
Given how big her heart was, it’s a cruel irony that in the end it failed her.
In January 2022 Philly died in her sleep when her heart just stopped one night after she suffered a bout of Covid, one that had required hospital treatment. She didn’t die because I refused to give her my kidney. I know that. Doctors would say the two things are not connected.
And yet . . . that doesn’t stop the question of whether it would have made a difference if I had from haunting me.
Because when she first asked for my kidney, I judged her. And while any mother would choose her child over her sister, the truth is I don’t think I would have given her my kidney back then even if I didn’t have children. I’m not sure if my guilt over that will ever leave me.
My continuing agony over my decision has helped inspire my new book, The Perfect Accident. In it, a woman has to make an impossible choice after a terrible boating disaster, deciding whether to sacrifice her own son, or let 22 teenagers die – one of them her sister’s child.
I wish now that, back when Philly asked me for my kidney, I’d given her the show of faith she needed. Perhaps it would have helped her get her life back on track sooner.
I spent so many years feeling bitter at how she had let me down, when the truth was it was me who failed her. And I will spend the rest of my life coming to terms with that.
- The Perfect Accident by Tess Stimson (Mountain Leopard Press, £10.99) is out on April 23.
