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Cord Blood Preservation

  • 08-02-2012 12:29pm
    #1
    Registered Users, Registered Users 2 Posts: 189 ✭✭


    Hi All,

    I was just wondering if any of you are considering getting cord blood preserved. I'm wondering if I could get this done in Limerick or if any of you have experience of it. There was an article in the Irish Times health supplement about it yesterday. http://www.irishtimes.com/newspaper/health/2012/0207/1224311390343.html


Comments

  • Registered Users, Registered Users 2 Posts: 673 ✭✭✭mrsWhippy


    In my paperwork from Holles St, they said, that neither they, Rotunda or the Coombe would support stem cell harvesting.

    If you were attending a private hospital maybe? I think it would be worth doing if you could tbh ...


  • Registered Users, Registered Users 2 Posts: 189 ✭✭taxus_baccata


    Only option to have baby in Limerick I'm afraid, Mrs Whippy!

    That's mad that they send out letters like that. I think its so unfair to limit peoples options like that :(. Have first scan in early March so that'll be a priority item on my questions list!


  • Registered Users, Registered Users 2 Posts: 673 ✭✭✭mrsWhippy


    Let us know how you get on! :)

    Yeah, the reason was that 'there wasn't adequate proof' or something that there are benefits to storing stem cells so they didn't support it (can't remember the exact wording).

    But if you got an outside consultant/health care worker to do the harvesting (and were paying for the service) then surely it's the mothers decision in the end? (proof or no proof!) I can see it might add an overhead to their service maybe but it would only be for a subset of patients too. Annoying!!

    Edit: Here ya go! http://www.independent.ie/national-news/collecting-baby-cord-blood-would-cost-1m-a-year-doctor-137383.html


  • Closed Accounts Posts: 14,949 ✭✭✭✭IvyTheTerrible


    I know in France it's actually against the law to store cord blood in this way.

    However, op, I'm going to do a cord blood donation when my baby is born. This is perfectly legal (I'll try and find out if it's possible in Ireland) and can actually save someone else's life. Also, it doesn't hurt and carries no risk for your baby. Might be worth thinking about.


  • Closed Accounts Posts: 23,862 ✭✭✭✭January


    Weren't the Coombe doing a study in 2009/2010 where they took cord blood for research? I was excluded from participating (not sure I would have anyway... didn't research it enough because the decision was taken out of my hands) because of my previous birth history.

    http://www.coombe.ie/index.php?nodeId=69&PHPSESSID=623e14c44a035ba8559a6be65217524b

    It's not exactly the same thing as you're asking but it's to help with research.


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  • Closed Accounts Posts: 27,833 ✭✭✭✭ThisRegard


    mrsWhippy wrote: »
    In my paperwork from Holles St, they said, that neither they, Rotunda or the Coombe would support stem cell harvesting.

    If you were attending a private hospital maybe? I think it would be worth doing if you could tbh ...

    Never noticed any documentation like that from the Rotunda, but I'm going back two years. We did enquire about it at the time and were simply told they don't do it but could look into getting a private company to do it.

    The impression was they were quite open about allowing a third party do it but we never investigated further so it might have changed had we pushed the matter.


  • Registered Users, Registered Users 2 Posts: 3,251 ✭✭✭cyning


    The bump2babe website has a question on cord blood harvesting: for Limerick it says they don't facilitate the harvesting but under additional information it does say
    Only when directed from Pelican house. Private consultants may facilitate private patients.
    I would imagine it will be years before it will be readily available in Ireland: very unfortunately I think.


  • Registered Users, Registered Users 2 Posts: 230 ✭✭SanFran07


    Some private consultants in the Rotunda do this (although the hospital says it doesn't). Interesting that because there is a lack of evidence around this procedure the hospitals are reluctant to facilitate it. Delaying the clamping of the baby's cord is associated with significant benefits for your baby and is well 'evidenced' and yet despite all of the evidence cords are routinely clamped immediately after birth. So the evidence has to suit the hospital...


  • Registered Users, Registered Users 2 Posts: 189 ✭✭taxus_baccata


    Thanks all, I'll be doing my research! I think I'll ahve to get a private company in to do it, but I am going to the hosptal as a public patient! I had switched to aviva for my health insurance and they make a cobtribution toward cord blood preservation, but through a series of feck ups it turned out that I'm still insured with VHI and paying heftily for it too!

    Hope I can use some of my health insurance for lactation consultations etc. I'd prefer to use my health insurace for post partum stuff!


  • Registered Users Posts: 8 Tore


    Hi All, has anyone of you more recent experience of cord blood / stem cell preservation? trying to arrange for it at Rotunda, but it still seems to be very confusing and even Hospital staff does not look like really aware of any procedure in place for it. The latest information we got is that they do it only in case of sick children, in all other cases they do not impede it, but it's totally up to you to arrange the collection. The collection is only allowed to a professional healthcare and we don't know if any at Rotunda trained for it who could do it (the hospital does not provide any name...). Are you aware of any private midwives, even external to Rotunda, that could be available for the collection on the delivery day? thanks for any info/experience you might want to share on this topic.


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  • Registered Users, Registered Users 2 Posts: 12,644 ✭✭✭✭lazygal


    I've had children in Holles St and they wouldn't facilitate it. I went private partly to give myself some wiggle room but they wouldn't let non hospital personnel in to do the collection. I'm still a bit annoyed about it because there's a genetic disorder in my family that stem cell treatment has been shown to help. I'd be interested in hearing if you can get the Rotunda to agree because if we've more I'd consider going there for the cord blood collection.


  • Registered Users, Registered Users 2 Posts: 3,041 ✭✭✭Penny Dreadful


    Public hospitals can't afford to store cord blood for every baby born. It is quite simply too expensive. If you have a familial health problem you can (afaik) store it yourself at your own cost. Private companies offer this facility but the samples are stored outside of Ireland- the USA and Switzerland (again afaik).
    Personally with all of the cuts to health services and maternity ones in this particular case due to lack of funding there are other things I'd prefer to see restored or started before the storing of cord blood for each and every baby born here.


  • Closed Accounts Posts: 3,284 ✭✭✭Chattastrophe!


    In fairness I can't see there being a high demand for the service.

    In Holles St, when I gave birth, they collected some of the cord stem cells for a research study (and my baby ended up in ICU with low blood sugar, which may have been related to a delay in clamping the cord, but that's another story!) The point is, they have the facilities and resources there to collect and store the cells, it shouldn't be a big task to do so, when requested, and pass them on to a nominated storage company.


  • Registered Users, Registered Users 2 Posts: 1,518 ✭✭✭krankykitty


    Mount Carmel used to allow this and had staff trained in the collection of the cells and sending them to wherever they get stored. Gone now, unfortunately


  • Registered Users, Registered Users 2 Posts: 12,644 ✭✭✭✭lazygal


    Public hospitals can't afford to store cord blood for every baby born. It is quite simply too expensive. If you have a familial health problem you can (afaik) store it yourself at your own cost. Private companies offer this facility but the samples are stored outside of Ireland- the USA and Switzerland (again afaik).
    Personally with all of the cuts to health services and maternity ones in this particular case due to lack of funding there are other things I'd prefer to see restored or started before the storing of cord blood for each and every baby born here.

    We were willing to pay all costs of collection and storage as stem cell treatment works for the illness in our family but the blanket refusal meant we weren't allowed. It was more to do with allowing non hospital staff into collect the cord material than financial considerations. I wouldn't care about it if it hadn't been proven to help treat the illness, but it has.


  • Registered Users, Registered Users 2 Posts: 230 ✭✭SanFran07


    Neighbourhood Midwives provide this service. No doubt you're aware that there are significant benefits to leaving the cord to finish pulsating so your baby receives all of the blood. Immediate cord clamping can result in as much as 1/3 of your baby's blood being left behind in the placenta putting your baby at higher risk of iron deficient anaemia.


  • Registered Users, Registered Users 2 Posts: 12,644 ✭✭✭✭lazygal


    SanFran07 wrote: »
    Neighbourhood Midwives provide this service. No doubt you're aware that there are significant benefits to leaving the cord to finish pulsating so your baby receives all of the blood. Immediate cord clamping can result in as much as 1/3 of your baby's blood being left behind in the placenta putting your baby at higher risk of iron deficient anaemia.

    I'm not eligible for midwife led care and prefer private consultant led care.


  • Registered Users, Registered Users 2 Posts: 230 ✭✭SanFran07


    Apologies for the confusion, I mean they offer this service as an extra - so you can have consultant care and hire NM to provide the cord collection service. I don't know the full details of the midwife being on call for your baby's birth but talk to NM about the options.


  • Registered Users Posts: 8 Tore


    Hey...thanks for all your answers, just got in touch with Neighbourhood Midwives. They confirm they provide the collection service. I'll get a call back today with all the details.

    The thing is that I am not looking for the hospital to collect/store the cord blood. I know this is not offered by the public service. As Lazygal I would do this privately, but still I need the hospital to allow someone external to collect the blood for me as I am not an healthcare professional and only healthcare professional are allowed to do this. So I would be happy to pay whoever could be allowed to collect the blood at birth and then I would arrange an agreement with a private company (there's one in Ireland) that will look after to send the sample to UK and store it for 20 years at my own expense.

    @ Lazygal: Rotunda confirmed me that they do not provide the service of collection/storage unless there is an health related issue. In your specific case I would try to get in touch with them as apparently they should support it.


  • Registered Users, Registered Users 2 Posts: 3,041 ✭✭✭Penny Dreadful


    lazygal wrote: »
    We were willing to pay all costs of collection and storage as stem cell treatment works for the illness in our family but the blanket refusal meant we weren't allowed. It was more to do with allowing non hospital staff into collect the cord material than financial considerations. I wouldn't care about it if it hadn't been proven to help treat the illness, but it has.

    There are a lot of issues with allowing non hospital staff to collect samples of any kind from patients of a hospital, insurance costs, legal responsibility if something happens the samples are mis labelled, stored incorrectly, etc.
    I work in the area of research and these are among some of the many concerns hospitals have.
    I'm not saying they are right to have this blanket refusal to allow collection in place but I can understand it.


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  • Registered Users Posts: 8 Tore


    There are a lot of issues with allowing non hospital staff to collect samples of any kind from patients of a hospital, insurance costs, legal responsibility if something happens the samples are mis labelled, stored incorrectly, etc.
    I work in the area of research and these are among some of the many concerns hospitals have.
    I'm not saying they are right to have this blanket refusal to allow collection in place but I can understand it.

    Just for this reason hospital's staff should provide at least the collection service. It's a procedure that takes no more than 2 minutes, with no cost for the hospital, that could save a life, that has no ethical implications whatsoever and that is totally safe. Hopitals in other countries offer the service for free or allow an employee of the storage company to come and collect the sample without making the life impossible to whoever decides to go for it. Why all these difficulties in Ireland?


  • Closed Accounts Posts: 23,862 ✭✭✭✭January


    Do the Rotunda collect a sample of cord blood... I'm pretty sure I saw something on my notes about there being a sample of cord blood taken...


  • Registered Users, Registered Users 2 Posts: 3,041 ✭✭✭Penny Dreadful


    Tore wrote: »
    Just for this reason hospital's staff should provide at least the collection service. It's a procedure that takes no more than 2 minutes, with no cost for the hospital, that could save a life, that has no ethical implications whatsoever and that is totally safe. Hopitals in other countries offer the service for free or allow an employee of the storage company to come and collect the sample without making the life impossible to whoever decides to go for it. Why all these difficulties in Ireland?


    Hospitals in other countries aren't working under the same staffing and budget constraints as the Irish ones are. Every extra task that takes only two minutes adds up.
    The collection of the samples requires certain training and not everyone is trained to do it. So then you have either an additional training cost or the few people that can do it are under greater pressure to collect all samples. This pressure will inevitably lead to mistakes being made.
    Allowing people who are not employees of the hospital access to patients has a lot of implications in terms of Garda vetting, insurance, confidentiality, etc.
    The question can be asked is it ethical to spend the scarce resources on a procedure that may save the life of someone sometime or is it better and fairer to spend the resources on helping more people in the hear and now.
    As I said I'm not advocating for the current position but I can understand it.


  • Registered Users, Registered Users 2 Posts: 8,029 ✭✭✭SusieBlue


    I wanted to do this too but my hospital wouldn't facilitate it. Instead I settled for delayed cord clamping, its benefits and advantages really aren't documented enough at all and it should be encouraged more. I'd never even heard of it until my sister-in-law told me about it, she's a medicine student.


  • Registered Users Posts: 168 ✭✭Drdoc


    January wrote: »
    Do the Rotunda collect a sample of cord blood... I'm pretty sure I saw something on my notes about there being a sample of cord blood taken...

    This is a sample taken sometimes to measure the pH of the blood to see if baby was very distressed before delivery. The more acidic it is, the more the baby may have been deprived of oxygen. It's collection method would be very different to what would be required for stem cells etc


  • Closed Accounts Posts: 23,862 ✭✭✭✭January


    Drdoc wrote: »
    This is a sample taken sometimes to measure the pH of the blood to see if baby was very distressed before delivery. The more acidic it is, the more the baby may have been deprived of oxygen. It's collection method would be very different to what would be required for stem cells etc

    Thanks for that, yeah baby had fetal blood sampling done while I was in labour and the section was done for failed induction (fetal distress was indicated by his heart rate playing up too), so that would make sense.


  • Registered Users Posts: 8 Tore


    Hospitals in other countries aren't working under the same staffing and budget constraints as the Irish ones are. Every extra task that takes only two minutes adds up.
    The collection of the samples requires certain training and not everyone is trained to do it. So then you have either an additional training cost or the few people that can do it are under greater pressure to collect all samples. This pressure will inevitably lead to mistakes being made.
    Allowing people who are not employees of the hospital access to patients has a lot of implications in terms of Garda vetting, insurance, confidentiality, etc.
    The question can be asked is it ethical to spend the scarce resources on a procedure that may save the life of someone sometime or is it better and fairer to spend the resources on helping more people in the hear and now.
    As I said I'm not advocating for the current position but I can understand it.

    I don't really want to go off topic, but tbh I don't think that 2 more minutes after hours spent on labour and giving birth would really significantly affect the budget of any country. If these same 2 minutes would potentially save even a single life in the future, then the cost would be by far lower than the benefit. Sorry but no, I can't understand this position.


  • Closed Accounts Posts: 12,449 ✭✭✭✭pwurple


    We had cord blood taken and stored for baby 1 as part of a medical study. It was taken in CUMH and is stored in UCC. We allowed them to use it though,, so I don't know would any be left if we went looking for it.

    On delayed cord clamping, that is now standard procedure in Cork. I spoke to the midwives about it during labour. No special request required, it's the norm.


  • Closed Accounts Posts: 14,949 ✭✭✭✭IvyTheTerrible


    Here in France you can donate cord blood for people with illnesses, but it is illegal for them to collect and store the blood for you.
    I signed up to donate cord blood but on the day they wouldn't let me because they said I had lived "in the British Isles" in the 90's. As I was mid-labour when this was explained to me I wasn't in a fit state to try to debate it. I was disappointed.


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  • Closed Accounts Posts: 3,284 ✭✭✭Chattastrophe!


    What's the reasoning behind it being illegal to store it there?


  • Registered Users, Registered Users 2 Posts: 12,644 ✭✭✭✭lazygal


    Hospitals in other countries aren't working under the same staffing and budget constraints as the Irish ones are. Every extra task that takes only two minutes adds up.
    The collection of the samples requires certain training and not everyone is trained to do it. So then you have either an additional training cost or the few people that can do it are under greater pressure to collect all samples. This pressure will inevitably lead to mistakes being made.
    Allowing people who are not employees of the hospital access to patients has a lot of implications in terms of Garda vetting, insurance, confidentiality, etc.
    The question can be asked is it ethical to spend the scarce resources on a procedure that may save the life of someone sometime or is it better and fairer to spend the resources on helping more people in the hear and now.
    As I said I'm not advocating for the current position but I can understand it.
    The point I have made is that stem cell treatment will save the life of someone with the particular illness that runs in my family. Its one of the few areas of illness where stem cells have been proven to work and negate the need for more invasive and risky treatment. There's no may save the life about it - it will save the life of my children if they develop this illness. And because of this me and my husband were willing to meet the economic costs of collecting and storing the cord blood. If there was a doubt about whether it was worth our while doing it I wouldn't have bothered asking. Is it ethical to have a blanket ban on something which has been proven to safe a life and which will reduce the costs of more invasive treatment in the future? I don't know what the answer is.


  • Banned (with Prison Access) Posts: 1,151 ✭✭✭rovoagho


    Tore wrote: »
    I don't really want to go off topic, but tbh I don't think that 2 more minutes after hours spent on labour and giving birth would really significantly affect the budget of any country. If these same 2 minutes would potentially save even a single life in the future, then the cost would be by far lower than the benefit. Sorry but no, I can't understand this position.

    As the OP clearly explained, it's not just about the 2 minutes, there are also training costs and safety implications. But lets focus on those 2 minutes anyway:

    CUMH had 8500 deliveries in 2012, which would be 17000 minutes of time added to deliveries, or around 283 hours. That's a LOT of money, and that's just one hospital. And again, it doesn't include additional training costs and/or the risk of allowing additional people into the delivery room.

    Me, I'd prefer to see that money spent on the reintroduction of anamoly scans, which have been removed from the standard process in Ireland. Other people would prefer other improvements.

    I'd like to retain the cord blood for my babies too, and I'd be happy to pay the cost of it, but it's not as simple as you'd like to believe it is.


  • Registered Users, Registered Users 2 Posts: 3,041 ✭✭✭Penny Dreadful


    What's the reasoning behind it being illegal to store it there?

    Cost.
    lazygal wrote: »
    The point I have made is that stem cell treatment will save the life of someone with the particular illness that runs in my family. Its one of the few areas of illness where stem cells have been proven to work and negate the need for more invasive and risky treatment. There's no may save the life about it - it will save the life of my children if they develop this illness. And because of this me and my husband were willing to meet the economic costs of collecting and storing the cord blood. If there was a doubt about whether it was worth our while doing it I wouldn't have bothered asking. Is it ethical to have a blanket ban on something which has been proven to safe a life and which will reduce the costs of more invasive treatment in the future? I don't know what the answer is.

    It will save a life in the case you've outlined. It may save 3 or 33 lives. The cost of providing the service may adversely affect the care given to 3333 lives due to the money being spent in one area over another. That is the thinking behind it.
    The ethics of it come down to do doing the most good possible with the money available. This means that a smaller group of people may not get the service or facilities they wish for as a larger group of people will be treated for the same amount of money being spent elsewhere.
    As I said before I am not saying the government is right in its blanket ban on this procedure and service but I can understand how the ban came about.
    rovoagho wrote: »
    As the OP clearly explained, it's not just about the 2 minutes, there are also training costs and safety implications. But lets focus on those 2 minutes anyway:

    CUMH had 8500 deliveries in 2012, which would be 17000 minutes of time added to deliveries, or around 283 hours. That's a LOT of money, and that's just one hospital. And again, it doesn't include additional training costs and/or the risk of allowing additional people into the delivery room.

    Me, I'd prefer to see that money spent on the reintroduction of anamoly scans, which have been removed from the standard process in Ireland. Other people would prefer other improvements.

    I'd like to retain the cord blood for my babies too, and I'd be happy to pay the cost of it, but it's not as simple as you'd like to believe it is.

    Thank you, that is exactly what I was getting at. :)


  • Registered Users Posts: 8 Tore


    rovoagho wrote: »
    As the OP clearly explained, it's not just about the 2 minutes, there are also training costs and safety implications. But lets focus on those 2 minutes anyway:

    CUMH had 8500 deliveries in 2012, which would be 17000 minutes of time added to deliveries, or around 283 hours. That's a LOT of money, and that's just one hospital. And again, it doesn't include additional training costs and/or the risk of allowing additional people into the delivery room.

    Me, I'd prefer to see that money spent on the reintroduction of anamoly scans, which have been removed from the standard process in Ireland. Other people would prefer other improvements.

    I'd like to retain the cord blood for my babies too, and I'd be happy to pay the cost of it, but it's not as simple as you'd like to believe it is.

    Let's focus on those 2 minutes then. I did not say a public hospital should offer the service for free for every single delivery. So your calculation is not accurate from my point of view. I just said that the public service should guarantee this service for free to anyone in the same situation of Lazygal where it is proven that this could save a life or even save additional costs for the public service in the future due to more invasive treatments as she already explained very well. The public service should also offer the service - not necessarily for free and so without any effect on the budget - to anyone who might want to preserve the cord blood. The amount paid could be used to provide the training (it's just a matter of taking a blood sample...so I am not sure what complicated training you think this might require...) or any other associated cost. I might be wrong guys, but I still do not see all the the issues you do. If you are not happy with the way the system currently works, well..you should then start thinking if who currently governs will deserve your vote again in the future, but I would not think another way is not possible...


  • Registered Users, Registered Users 2 Posts: 885 ✭✭✭Dingle_berry


    The IBTS provide a small service to families with appropriate medical histories. It's part of their tissue bank, not the blood bank.
    For other families the chances of someone needing cord blood stem cells is way less than 1%. After your teenage years, if you needed a transplant, you would need more than one unit/donation so a unit from your birth would be useless on its own.

    Our healthcare is seriously understaffed. Holles st has the best midwife ratio and is still understaffed and over occupied. The time the midwife or consultant spends with you collecting cord blood is time they're not spending with the patient in the next room.

    The chances of the cord blood donation being used are too small to justify the extra time and costs involved.


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  • Registered Users, Registered Users 2 Posts: 3,041 ✭✭✭Penny Dreadful


    Tore wrote: »
    Let's focus on those 2 minutes then. I did not say a public hospital should offer the service for free for every single delivery. So your calculation is not accurate from my point of view. I just said that the public service should guarantee this service for free to anyone in the same situation of Lazygal where it is proven that this could save a life or even save additional costs for the public service in the future due to more invasive treatments as she already explained very well. The public service should also offer the service - not necessarily for free and so without any effect on the budget - to anyone who might want to preserve the cord blood. The amount paid could be used to provide the training (it's just a matter of taking a blood sample...so I am not sure what complicated training you think this might require...) or any other associated cost. I might be wrong guys, but I still do not see all the the issues you do. If you are not happy with the way the system currently works, well..you should then start thinking if who currently governs will deserve your vote again in the future, but I would not think another way is not possible...


    It costs money to train people. It costs time to train people. Both of these things are in very short supply in the healthcare system. If the service was to be offered by someone who was not an employee of the hospital then it brings with it a host of issues around data protection, Garda vetting for access to patients, insurance, etc.
    There are loads of things that I'm not happy about in terms of the health care system and how it works or doesn't work and that isn't only in relation to maternity services. However, if you take the current reports on midwife services all across the country but particularly in Portlaoise: 1 midwife was covering 70 births, its a better rate now but still way above internation best practice. I'd rather the money that is available or may become available was put into improving those levels over cord blood storage. I'd rather the money was spent on restoring the scans that women were given as standard practice before they were dropped in one of the many rounds of cuts.
    In terms of other healthcare services, I'd rather the money was spent on cancer screening so catching cancers earlier than they do and so saving more lives in that way. I'd rather money was spent on improving and widening hospice care to those who are dying in acute general hospitals rather than in the comfort of their own home or a palliative care unit. I'd rather the money was spent on increasing the services available to children with severe disabilities so their parents don't have to rely almost entirely on organisations such as the Jack and Jill Foundation.

    There are always choices to be made with the money available and I don't think enough people will be positively affected by the storage of cord blood to make the spend acceptable. Those who will be positively affected will of course feel differently as is understandable.


  • Registered Users Posts: 19 melusina


    I had this done in Rotunda a year and half ago. I had to be a private patient to do it. There are 2 or 3 consultants trained for a procedure. Private company will store the stem cells then. Other staff was not really aware that this can be done but the consultants said they were doing a few a year.


  • Registered Users, Registered Users 2 Posts: 324 ✭✭Carrie6OD


    Has anybody had any experience of this done in the Coombe? I would like to harvest umbilical cord stem cells for possible treatment of my MS in the future.


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