Saturday 17 March 2018

The great stem cell debate: The storing of cord blood

The storing of cord blood is routine in most European countries and valued for its medical benefits in the future of a child. Áilín Quinlan reports on why, then, it's difficult to have the procedure carried out in Ireland

Katalin Dempsey with her daughter Emily. Photo: Alf Harvey/
Katalin Dempsey with her daughter Emily. Photo: Alf Harvey/

Áilín Quinlan

IN KATALIN Dempsey's native Hungary, the collection of cord blood is a routine part of the birth process – but, as she discovered before giving birth here earlier this year, not in Ireland.

Cord blood, collected from a baby's umbilical cord, is a valuable source of adult stem cells which have been used to treat children with certain blood diseases since 1989.

But, in Irish maternity hospitals, this biological material, which has the potential to be used in lifesaving therapies, and which advocates view as a form of 'health insurance' for their babies, is generally discarded as medical waste.

It's a controversial issue – back in 2012, the then Fine Gael politician Alan Shatter, now Minister for Justice, said hospitals did not have the right to decide whether patients could retain cord blood and warned the situation could result in legal action.

Stem cells have been called miracle cells because of their ability to transform themselves into any of the human body's specialised tissue.

Because these cells can be reprogrammed, researchers have made exciting advances in their adaptation for the treatment of heart attacks, strokes, diabetes and potentially neurodegenerative diseases too.

Little Emily Dempsey, who is almost two months old
Little Emily Dempsey, who is almost two months old

These cells are already being used to help treat patients with conditions such as cancer, sickle-cell anaemia, immunodeficiency, marrow failure and genetic diseases that call for transplants.

Harvesting has become increasingly popular in some European countries – in Greece, around 18.5 per cent of parents harvest and preserve stem cells; the figure is 12 per cent in Spain and 8 per cent in Portugal.

To date, an estimated 30,000 cord blood stem cell transplants have taken place worldwide – but in Ireland the situation is not provided routinely, as Katalin Dempsey discovered.

Although Katalin (37) was scheduled to give birth in the National Maternity Hospital in Holles Street, Dublin, everything changed late last year when she was six months pregnant and the mum-to-be and her husband Oliver discovered the hospital didn't provide the service.

Katalin was shocked: "Cord blood collection is widely available in Hungary. It's the usual thing."

She added that her friends had all had the procedure when they gave birth to their children.

In a statement, the National Maternity Hospital confirmed that it does not offer the service, adding that there was "insufficient evidence at the moment" to recommend directed commercial cord blood collection stem cell storage in low risk families.

The statement also said there were "a number of indemnity issues surrounding the collection of cord blood for stem cell collection for commercial companies".

Initially, Katalin considered flying back to Hungary to have her baby, but then made inquiries at Mount Carmel Hospital, where she was told that the procedure would be carried out.

However, that hospital closed earlier this year amid a blaze of publicity, not long before Katalin's daughter Emily, now aged about seven weeks, was born on March 10.

"I really wanted this procedure," she says, adding that at some stage in the future, if her baby needed stem cells, she wanted them to be available, as cells can be stored for up to 25 years.

"It's incredible to think if my baby got sick down the line that I was not allowed to store these cells which could potentially provide a lifesaving therapy. I'd feel absolutely awful.

"You never know what might happen in the future. Emily's stem cells could be used to help her future siblings, or even her parents, so I felt it was very important – the question was why not do it?"

It was back to the drawing board for the couple, who live in Jamestown, Co Laois.

After some investigation, they learned they could have the procedure done in the Rotunda Private Hospital.

"This was just a few weeks before I was due to give birth.

"I was literally due in two or three weeks. We got the procedure carried out in the Rotunda Private.

"Immediately after the birth, the cord blood was collected from the umbilical cord. It was brought by courier to a laboratory in England where it is being stored," she recalls.

However, the hospital does not carry out the procedure routinely, explains Sam Coulter-Smith, Master of the Rotunda: "There are very few medical indicators for this.

"It's not something that, as a hospital, we'd encourage people to do as there's a lack of evidence as to its benefits.

"It's something that's being pushed commercially and not something we feel should be routinely done."

However, he acknowledged, if people wanted to have the procedure they needed to make individual arrangements to have it performed.

Katalin's husband Oliver doesn't believe hospitals have the right to refuse parents who wish to store their cord blood.

"Hospitals have an obligation to provide this service," he said.

"It is in breach of a parent's constitutional rights to be told they cannot retain their child's cord blood to possibly save their child's life in the future.

"In America you would have to actually opt out if you don't want to store the blood; why is it the opposite here?" he added.

Health sector sources say that while most consultants are "very open to this procedure", hospital policy varies widely, and consultants "sometimes feel they cannot make the service available to expectant parents".

In a statement, the HSE said it does not collect stem cells for "undetermined future medical need" but that it does offer the service: "albeit very rarely, if a clinical need is predetermined at the time of delivery."

"A cord blood bank for the storage of stem cells for future medical need – undetermined at the time of birth – is not a service currently provided with the public health system.

"The HSE is aware that the service is privately available and that there are commercial organisations active in this market in Ireland.

"The Irish Medicines Board is responsible for regulating companies which provide this service."

The statement went on to say: "In very rare circumstances, and for specific reasons, for example, families with inherited blood diseases, the cord blood stem cells are collected at the time of birth to donate to an identified individual.

"This would be for a predefined clinical treatment, ie, the sibling of a new born child, where the sibling has an inherited blood disease.

"As a result, the scenario is distinct from the service of cord blood banking for the storage of stem cells for future medical need, undetermined at the time of birth.

"The service for families where stem cells will be used for a predefined clinical treatment is undertaken by the Irish Blood Transfusion Service in collaboration with the HSE and the service is indemnified by the Clinical Indemnity Scheme."

Currently, the procurement of cord blood can be carried out at any hospital in conjunction with an Irish Medicines Board authorised entity. One such private company authorised by the IMB in Ireland is the Wicklow-based firm Medicare Bio Health.

There is a lack of uniformity in the availability of the service to the public, believes Michael Doherty, managing director of the firm – the only Irish company offering a service to facilitate the collection of cord blood in this country.

"It's now being done on a case-by-case basis in different hospitals. It's very much between the parents and the consultants and hospital," explains Doherty.

"Our function is to train the person who takes the blood, and, once the person has procured the blood according to the training, we arrange for the blood to be transported to the UK laboratory where the stem cells are extracted from the blood and stored.

"We provide the procurement kit; and the trained person who procures the blood," he says.

He added that the company had an agreement with Mount Carmel Hospital to train staff in the collection of the cord blood.

"Nobody knows when a baby is going to be born, so if you only have one trained procurer it can be difficult," he points out.

"Medicare has a fully insured system in place which allows hospitals to provide the service under our licence so they do not have to interact or obtain a licence from the IMB.

"We interact fully with the IMB to ensure compliance with IMB regulations. We also pay a fee per successful procurement, to compensate for the time spent on collection."

It costs in the region of €2,400 to procure and store the cells with a private company.

"Mount Carmel was the only hospital we had a contract with and which allowed us to train their labour ward staff and others who wished to be trained, thereby ensuring that mums could have their cord blood procured following birth," says Doherty, who believes parents ought to have the right to collect cord blood should they wish to do so.

"The cord blood belongs to the mother and she should have the right to determine its use for the future benefit of her child.

"Cord blood collection is a form of health insurance for your child. The HSE discards the cord from which the blood is taken," he says.

He added that US research has shown there is a one-in-200 chance that a baby born today will need their stem cells in their lifetime.

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