Cord Blood Banking?(40 Posts)
I mused whether to post here or in pregnancy, but it is more to do with the actual birth I think...
Has anyone any experience/recommendations for this? I appreciate that it is a sort of "baby insurance policy" that may never be used (i.e. having cord blood collected and then stored for 25 years). You pay £1500/£1800 to collect and store something that you pray that you will never have yo use.
We saw three companies at the Baby Show this weekend:
- Smart Cells
- Future Health
- UK Cord Blood Bank Ltd
I spoke to the former company the most, but perhaps the latter company seemed the most medical/laboratory based (which seemed more technicallly reassuring).
Anyone have experience or any opinions (on which company, rather than whether to do it at all or not...)? I appreciate that it is difficult to have "full" experience unless you have needed to actually use the cells (i.e. the collection can be fine, but you don't know whether they were effectively collected and stored until you come to use them).
In February 2016, we published a guide to help parents to make informed choices about cord blood banking. The guide was launched in response to a survey conducted by the HTA in 2014, which revealed a clear need for more information on banking cord blood. The guide, which offers information about donating cord blood to a public bank and banking cord blood privately, was developed in collaboration with clinicians, consultants, and other experts in this area.
You can find a link to the guide here.
To help us make sure our guide is helpful and contains the information that is important to you, we want to hear from anyone has either already banked cord blood in a public or private bank, or would consider doing so in the future.
We also want to hear from people who have read or come across our guide before and to let us know whether you found it helpful. Your feedback will help us understand how much parents now know about cord blood banking and help us ensure the guidance we share sets out what is involved and what it might mean for you and your child in the future.
You can share your feedback by filling out this short survey before 15 September 2017.
If you have any questions, please email us at firstname.lastname@example.org
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I looked into having my cord blood stored for future use for my sisters who suffer with a lifelong condition. I saw Cells4Life on Facebook and got in touch with the admin on their page. They were extremely helpful, talked me through the whole process and were incredibly warm friendly and approachable taking the time to answer all the questions that i had (and there were a fair few!!). They had answers to everything i needed to know and also spent a lot of time and effort researching into my sisters conditions to be certain it was something that could help them in the future, something they didn't have to do but still took the time to. I found my experience with them very positive, the two ladies i spoke to were very competent and bend over backwards to meet my needs. They treated it with a personal touch and not once did i feel like a number or a statistic i was a person. I've recommended them as a company to everyone i've come into contact with since and one of my friends is due to use them in the next couple of months because of it. She is also very happy with the way they've handled her and been so informative. My partner was a little dubious of the whole banking issue but they put his mind at ease by also answering everything he had to ask and explaining to him in full where the blood goes, how its stored and what it can help with. I will continue to recommend them to people and cannot say one bad word about my experience.
I always find these forums interesting if not a little amusing!
I AM a stem cell biologist and I worry about folks being given incorrect info in this important field. CatherineBT seems to have a problem with Cells4Life (a UK company) from her previous posts and nothing but praise from the bank she used (Precious Cells). I would like to point out a couple of misunderstandings (at best) or deliberate attempts to mislead (at worst) from CatherineBT.
1. The fact that a stem cell bank couldn't transport quickly enough is ridiculous
2. The only reason most of us store volume reduced cells is cost....its cheaper to store smaller volumes
3. All separation technologies leaves significant red cell content it is difficult to obtain a pure nucleated cell fraction (so 4 applies to those too)
4. Peer reviewed publications show that the it is red cells which burst ( or hemolyze), but this has no ill effect upon transplantation (no need even to first wash before transplant)
By far the most worrying thing said is contained in the final sentence (it is this sentence which spurred me into writing rather than just laughing at the comments). CatherineBT suggests that a client of one bank can easily move the cells to another and get volume reduction performed less expensively. This is such terrible advice I can hardly believe it. There would be widespread cell death as the blood would need to be thawed and then re-frozen-you would be lucky to retain any viability in this scenario.
CatherinBT - If you are scientifically trained (or linked to any particular bank) you should be ashamed at the paucity of your knowledge, if you are as you say a client of a bank, maybe you should call them and get clarification as to the feasibility of your advice before posting it. I am sure they wouldn't thank you for giving them the headache of having to deal with this type of request if they are a bone fide operator.
@CatherineBT - are you a stem cell biologist? Who do you work for? What are your credentials to make these statements?
My husband is a doctor and he researched all the companies. In the end we went with Cells4Life because of the whole blood. Just look at their web site and you will see that you can treat a lot more diseases with their method http://www.cells4life.co.uk/when-should-i-store-whole-blood.
chegirl I am so sorry for your loss. I wanted to donate to NHS to help others but both times gave birth on a Saturday so there was no one to collect the cord blood. Pity. Why couldn't they keep it until the following Monday? Will try again if lucky enough to have DC3.
Be careful here... I went into this post knowledge research over months. Virgin sample too small to be used (bit kept for your child) once they donate it to be used by any needy person globally. My concern was that why so expensive if giving it away? Can they guarantee to keep your sample if you need it - NO! I then looked at Cells4life but they do not 50:50 split sample as they suggest, buyer beware... Not the secure option they suggest with two samples when ONE is TINY... arrggghhh! I found it all frustrating and didn't in the end
I have a gorgeous 8 month old and we had the cord blood stored with Cells4Life after much research. I am totally convinced by the need to collect stem cells they use stem cells now to treat all sorts of diseases and in Israel, where biotech is much more advanced than here, everyone has cord blood stored. I chose Cells4Life because they were the most professional and the company was started and is run by scientists who are doing it for the right reasons ie because of the potential to cure so many diseases and not the money as the other couple that my NHS hospital would use seemed to be. I wrote a review of the process on my blog which says it all really... pregnantcitygirl.com/2012/04/12/cord-blood-storage-an-old-post-that-fell-through-the-cracks/
I know people at Future Health in a professional capacity, have seen their storage facility. They were also the first approved by the dept of health
I m now 32weeks pregnant, thinking of storing my baby umbilical cord with stem4life. I would like to know anyone has done it with stem4life, any good? Anyone has visited the company?
Yes, update from me, we did use Smartcells too...
We didn't need the third party phlebotomist in the end - since we had the baby at the Hospital of St John and St Elizabeth (they are licenced to collect the cord and maternal blood). The midwife would have collected the cord blood, but I had a planned C Section (breech baby) - so the surgeon did instead. The hospital was excellent at helping my husband check and package everything.
Baby was born 8.21am on Monday, the package was collected by about 5pm that day (later than expected - we were told about 3.30pm), but perfectly satisfactory...
Very happy with Smartcells... although, obviously, wont know the full extent of their service unless we need to use the cord blood (which I hope we don't!).
Sorry I've been m.i.a for a while... I've been getting to know my DS, who is beautiful, btw!!
just to comment on some of the earlier posts...
I used smartcells and they were brilliant - really reliable and professional. the thrid party phlebotomists they use are the Phlebotomy Clinic who were also professional and very responsive to all DH's texts and a couple of frantic phone calls on teh day. Our phlebotomist packaged evetrything for us and Smartcells had a courier at the hospital within 4 hours. (i delivered early on tuesday mornign)
i can't recommed them enough. i've already told a few friends to go there and aparently i will get a gift if my friend stores as well! yay - more shopping for DS.
QT- sorry i didn't get back to you but i hope everything went as well for you as it did for us.
We used Cells4 Life and my husband did the phlebotomy after taking their training. You need to check what the hospital rules are as well. The courier came promplty and I they were happy with our sample. It's not for the faint hearted though getting the sample yourselves.
QTPie thanks for your message. Has anyone used any of these phlebotomist companies and could they give some feedback on their experiences (eg with Phlebotomy Clinic or Phlebs Direct)?
The Phlebotomy Clinic are the "back-up" phlebotomists that we are using JUST INCASE we cannot delivery at John and Lizzies (whose midwives are licenced to extract the blood for us). It now looks unlikely (everything crossed) that we will need the Phlebotomy Clinic since I am now 36 weeks (the minimum gestation for admittance to John and Lizzies). BUT, in the interim, Phlebotomy Clinic have been fine to deal with: they provided me with the appropriate forms to sign, lined up two stand-by Phlebotomists in my area and provided an emergency contact number (incase of problems...).
GracieGirl, unless you are VERY lucky, it is very likely that you will be "on your own" regarding taking the blood samples (tend to need a maternal blood sample in addition to the cord blood): the NHS don't tend to support the taking of cord blood... This was why we had a "stand-by phlebotomist" service lined up (incase we had to delivery in an NHS hospital). I didn't fancy my husband having to take the samples! . The extra £300 (or about that) for a professional seemed like a price worth paying...
Interesting about Virgin... I had already ruled them out because they only store the blood for 20 years (and not 25) at the moment. But what you say, CoteDAzur, is very interesting...
I looked at Virgin for DS, but didn't go with them in the end because they expect you to donate most of the collected blood. What they save for you isn't enough for any therapy. I spoke to one of their guys and he said they think that a technology will soon be available that multiplies these stem cells so it will be OK
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