Cancer patient Nilush Aponso knows he is only alive today thanks to a decision by two anonymous mothers to donate the umbilical cords of their newborn babies.
The blood the cords contained provided life-saving cells to cure his cancer.
Nilush, 42, from Barwell, Leicester, who owns a doggy day centre, had an aggressive type of blood cancer, acute myeloid leukaemia.
Initially, chemotherapy had seemed to clear the disease but three months after his treatment finished, the cancer returned.
He was told that the only treatment option left was a stem cell transplant — donated cells that would make their way to his bone marrow, where they could grow and make healthy new blood cells.
Nilush, 42, from Barwell, Leicester, had an aggressive form of blood cancer. He said he encourages the customers at his doggy daycare to donate
Xin Tong with her husband Justas Budraitis and their baby daughter Luna Budraitis (pictured) from Manchester. The couple donated baby Luna’s cord blood
‘I’d spent eight months in and out of hospital, having three lots of chemotherapy and trying different types of drugs, more than I can remember,’ says Nilush. ‘But none of them worked and doctors told me my only option left was a transplant.’
Stem cells can be taken from a donor’s blood or bone marrow, but the patient’s tissue type needs to be matched.
‘My younger brother was tested to see if he was a match, but sadly he wasn’t,’ says Nilush. ‘And as I’m Sri Lankan, I was told the chance of finding a match was much lower than usual because there is a shortage of people from minority ethnic backgrounds on the bone marrow register.’
Those from a minority ethnic background have only a 37 per cent chance of finding a bone marrow match from an unrelated donor, whereas someone from a white Caucasian background has a 72 per cent chance because there are many more from this population signed up to the register.
A recruitment drive among the Sri Lankan community in London couldn’t find a match for Nilush, so the only chance for him was a transplant of stem cells from cord blood, i.e. that which remains in the placenta and umbilical cord following the birth of a baby.
Stem cells from cord blood don’t have to be as highly matched in terms of the donor tissue type as adult stem cells.
This blood is rich in blood stem cells similar to those found in bone marrow, and because these cells have the ability to transform themselves into different types of cells, they can be used to treat a range of blood cancers, genetic disorders and immune deficiencies.
The charity Anthony Nolan, which runs the oldest bone marrow register in the UK, is now campaigning to encourage more parents to donate their baby’s cord blood.
Since starting its cord blood storage programme in 2008, 324 of its donations have been used for life-saving transplants: the charity aims to bank 800 cords a year, from as diverse a population as possible.
The major benefit of cord blood stem cell transplants is they’re less likely to be rejected by the host than an adult donor’s cells.
‘The stem cells from cord blood are more naïve as they haven’t been exposed to the environment or pathogens that could cause disease to a patient,’ explains Dr Roger Horton, lead cord specialist at Anthony Nolan.
‘They don’t react in a way that could negatively impact the patient’s health as much long term, which is always a possibility with cells from adult donors. So we are able to have a higher degree of mismatch and the transplant can still be a success.’
If no suitable donor is found, the charity will scour international registers for a match, as happened with Nilush.
He knows the stem cells used in his transplant came either from the cord blood of a baby born in the U.S. or from one born in Australia, as both matched.
‘I’m all over the place — a Sri Lankan, living in England, with an immune system from an American or an Australian,’ Nilush laughs.
As well as increasing the number of transplants possible, cord blood stem cells extend the age range of patients to those of retirement age.
‘With adult donor cells, high doses of chemotherapy are needed to thoroughly clean out the patient’s own immune system — and the side effects of this can be too harsh for older patients or those with other complications,’ explains Dr Horton.
‘But when using cord blood, you can use much less intense chemo, so it’s broadened the window for transplant to people who have recently retired or older.’
Cord blood transplants have also increased the survival rates of some blood cancers, particularly in young patients with high-risk blood cancers. The exact figures are due to be published later this year.
The drawback of using these cells is an umbilical cord only holds 70ml to 300ml of blood.
‘It’s a finite amount, so we can’t go back for a top-up if a patient needs more, which of course we can do if an adult donor is a match,’ Dr Horton adds. (And with some diseases ‘only adult donor cells will work as it can be given in greater amounts’.)
The actual transplant is relatively simple, Dr Horton says.
‘The bag of cord blood, which has been stored at minus 196c, is defrosted in a waterbath at the patient’s bedside and is infused via a central line into the chest, in a process lasting less than 20 minutes,’ he says.
‘It then takes between seven and 28 days to repopulate the bone marrow and create a functioning immune system.’
After having the cord blood transplant in November 2013, Nilush had to stay in hospital for two months. Since then, he has remained cancer free.
Yet when he was diagnosed in June 2012, after losing weight and having no energy, he was told his cancer was so aggressive that he had to start treatment immediately. He wasn’t even given the time to go home first.
‘I just had to start the chemotherapy straight away,’ he recalls.
Anthony Nolan collects cord blood from babies born at five hospitals: St Mary’s Oxford Road and St Mary’s Wythenshawe, both in Manchester; Leicester Royal Infirmary; Leicester General Hospital and King’s College Hospital in London.
Separately, the NHS collects cord blood from University College London Hospital, St George’s Hospital in London and Luton & Dunstable University Hospital.
‘Immediately after the baby is born, and the placenta is delivered, one of our collectors takes away the placenta and umbilical cord,’ says Dr Horton.
Once collected, the blood is processed and tested to ensure it is free of viruses and bacteria, and is used either for research or is frozen and banked to be used for patients in the UK or around the world. It’s the same process for cord blood collected by the NHS.
Anthony Nolan works with the NHS in sharing the register and together they store about 35,000 cord blood donations in Nottingham and Bristol. Unlike blood donations, cord blood can be stored indefinitely.
Despite the amount already stored, more donations are needed, particularly to help patients from African, African-Caribbean, Asian, Chinese, Jewish, Eastern European and Mediterranean communities.
Xin Tong, 34, and Justas Budraitis, 29, donated their daughter’s cord blood.
Xin was a blood donor in China and is pleased that her daughter Luna has followed suit, saying: ‘She was born a life-saver’
The couple, from China and Lithuania respectively, met when they were studying at Manchester University. Now married and still living in the city, their daughter Luna was born on October 26, 2022, weighing 8lb 9oz.
‘We wanted to welcome her into the world by doing something with significance,’ says Xin, an e-commerce account manager.
We saw the posters up in the hospital about donating when we went for antenatal checks and decided to sign up,’ Xin explains. ‘It was a simple process and we were told that when we went to hospital for the birth I should tell the midwife, who would inform Anthony Nolan.
‘I ended up going into hospital early as Luna had stopped growing and needed to be induced, but I was still able to donate the umbilical cord.’
Xin was a blood donor in China and is pleased that her daughter has followed suit.
‘She was born a life saver — she’s really special,’ says Justas, who is an IT consultant.
Understandably, Nilush and his wife Helen, 55, are also vocal about the importance of cord donation.
‘I tell all my customers about its benefits — and since then two of them have donated successfully,’ Nilush says, proudly.
‘I wish everyone would look into it. I don’t know when the parents donated or who they are, but their decision to donate their babies’ umbilical cords is why I am here today. And I want other people to have the same chance.’