Q&A about bone-marrow donation and cord-blood donation with the communications team from Anthony Nolan - ANSWERS BACK

[RachelMumsnet]

Given the number of questions raised on this thread, we've been in touch with the communications team at Anthony Nolan and we're delighted that they have agreed to join us this week and answer your questions.

Anthony Nolan is a charity that helps save the life of people with blood cancer by using their register to match them with volunteers willing to donate their blood stem cells. There are currently 430,000 people on the Anthony Nolan register, but they are only able to find a match for around half the people who are in need of a lifesaving transplant. In order to double the number of lives they help save, they want to grow their register to one million potential donors. They are particularly keen to recruit young men aged 18-30, as they are the most likely to be chosen as donors.

Anthony Nolan also runs a cord blood donation programme at four hospitals around the UK. A cord blood unit is an alternative to finding an adult donor, and has many advantages, such as being immediately available for transplant, which has better outcome for patients. It also helps to address the lack of adult donors from ethnic minority backgrounds, who are traditionally underrepresented on the register. Under the scheme, mothers can donate their umbilical cord and placenta (usually thrown away as clinical waste), which are tissue typed and stored until needed. Donating does not interfere with the baby's birth once the baby has been safely delivered, a dedicated cord collector will make the collection, leaving the midwife free to focus on mother and child. For more info, please visit www.anthonynolan.org/cordblood. It is estimated that if they can collect 50,000 cord blood units (between Anthony Nolan and the NHS), they will be able to meet 80% of transplant requests.

Send in your questions about stem cell (or bone marrow) transplants, the work of Anthony Nolan and their cord blood donation programme and we'll be sending over a selection of your questions to a panel at Anthony Nolan: Ellen Marshall (Communications Officer), Guy Parkes (Head of special Projects) and Amanda Blum, (Donor Support Supervisor). As we're keen to get the answers back and live on the site asap, we're not setting a close date for the Q&A but will post on this thread once we have enough questions to send over and will keep you posted on when to expect the answers back.

To sign up to the register, you simply need to visit www.anthonynolan.org/spit, fill in a short application form and provide a small saliva sample. As it costs £100 to recruit each new donor to the register, the charity needs vital funds as well. More info can be found at www.anthonynolan.org

They didn't answer my question .

I'm sorry but I can't support a charity with questions about their ethics that the are unprepared to answer.

SLM, when the cord is cut is not up to ANT, more likely the hospital so not sure they could answer your question.
Your not supporting a charity, your saving a life

Lisad, you could also be risking a life or risking the quality of life.

I'm honestly not opposed to the reasons and the ethos of this charity. I am lucky not to have experienced directly the issues that this charity deal with, but I have experience the devastation of having your child's life chances scuppered simply because the processes are not in place when coukd easily be so.

This charity would very sensible to figure out how to address my concerns because there is a growing movement and increasing research that will mean more parents encouraged to keep the placenta attached to the baby for as long as possible even until after it has been delivered. The group of mothers in this camp are likely to be the 'kind' of mothers who would consider cord blood donation so the issue really does have to addressed.

Starlight, they may not have answered your question directly, but they did answer Woollyhead's, which to me is the same question, unless you are reffering to your menstrual blood question:

Woollyhead: Can cord blood be collected if a mother has had a natural third stage and waited for the cord to stop pulsating before allowing it to be cut?

I'm all for donation, but some of the blood in the cord rightly belongs in the baby and depriving them of the last bits by cutting it immediately actually reduces the baby's iron status at six to nine months and reduces their overall blood volume after birth.

Anthony Nolan: We would never interfere with a mother's chosen birth plan. Whatever birth plan a mother chooses, she can donate her cord blood as long as she falls within our medical inclusion criteria.

Thank you g. that was a part of it I agree, but they do say ASAP after the baby is born which implies there is less point if you have waited 45 mins for the placenta to detach before cutting the cord. And if there is no goodness there then, is it because the baby has it?

I am so pleased, because they answered my question and I can register.

Are there plans to extend the number of hospitals collecting cord blood? I really wanted to but there is nowhere near me that does it but hoping to if I have further bbs

When I had my bb (6 weeks ago) I discussed the clamping of cord over delayed clamping and midwife (who
I think is best authority) said that the research on delayed clamping is very limited and although it is shown to be a benefit when the baby is older it can actually be unhealthy for a newborn and give increased risks of complications for them at that time

@StarlightMcKenzie

They didn't answer my question .

I'm sorry but I can't support a charity with questions about their ethics that the are unprepared to answer.

Sorry your question wasn't answered; we were only able to send a selection of questions over because there were so many so it wasn't that they were avoiding yours to skirt the issue. We've been in touch with AN this morning and sent your question over and will post their response up on this thread and pm you once it's up.

Wow a subject close to my heart this one we all need to carry donor cards, its the person we loved not their organs is my philosophy. More power to you girls donating seriously in awe and impressed :)
Just wish I could to :(

@GlitterMagnet

Wow a subject close to my heart this one we all need to carry donor cards, its the person we loved not their organs is my philosophy. More power to you girls donating seriously in awe and impressed :) Just wish I could to :(

GlitterMagnet, if you can't donate bone marrow but are able to donate some cash to help Anthony Nolan process all the registrations etc, we have set up a Just Giving page here. No pressure, of course, but anything you or anyone else can spare would be much appreciated.

Southseagirl I had this discussion with my consultant who said he advocates delayed clamping.

Also BBC reports:

"Delaying cord clamping reduces the risk that the baby will have iron deficiency anaemia without substantial side effects, the authors told the BMJ.

The World Health Organization dropped early clamping from its guidelines some years ago.

But there are no formal guidelines for NHS staff about when the cord should be cut."

I can't remember if they did take mine or not, I was so tired and in horrid pain, plus then I had c section so didn't see them take it! But I think everyone that can should donate, it's not needed for anything so why not!

Thank you for including my question.

@StarlightMcKenzie

What woolyhead said. I think you're a great charity but have some concerns about the way a birth would have to be 'managed' in order to collect the blood cells.

Research is now suggesting that the cord should be cut much later than it currently is, after it has stopped pulsating and perhaps even after the placenta has been delivered in order to bring the baby into the world more gently and to ensure they get their full allowance of iron and reduce the likelihood of jaundice. I emailed you charity in the past asking for clarification on this and you said you were 'working on a solution to this'. Have you found one?

Finally, is there ant mileage in menstrual blood donation?

Anthony Nolan team have just come back to us with their answer to this question:

'We would never interfere with a mother?s chosen birth plan. Whatever birth plan a mother chooses, and at whichever point the cord is cut, she can donate her cord blood as long as she falls within our medical inclusion criteria. Unfortunately, we don?t think there is any mileage in menstrual blood donation, as it is a very poor source of blood stem cells. It would be very difficult to harvest the number of cells needed for a bone marrow transplant, and it would be almost impossible to 'harvest' this in a way that avoids contamination with micro-organisms such as bacteria or yeast.'

Thank you Rachel and AN.

Hi, I just found this thread after trying to register in response to the thread about Expat's daughter, as I was wondering why sciatica led to me being rejected (mine was purely pregnancy related). Did AN come back with answers? Are they one a different thread?

on a different thread even!

I have now found the link to the Q&A.