Cord Blood Banking?

[QTPie]

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).

Thanks
QT

[whomovedmychocolate]

Virgin do it to - we planned to with DD but ended up donating to the UK cord bank. There is every likelihood if we needed it, it would be available for her. They forgot to get DS's during a planned CS.

[chegirlknowswhereyoulive]

Was desperate to do it with DS3. I couldnt access an NHS service so resorted to shamless publicity in a certain newspaper. It worked and Future now store my cord blood for free. Its very nice of them and I really appriciate it but I really wanted them to be available for everyone.

My DD died from Luekemia. I hope that one day, collection will be available for everyone and more people will be able to achieve remission though cord cells.

[BeckynSteve]

QT - I was also at the baby show and I ordered a kit from Smart Cells. I agree that you can't know about the "full" experience without having to use the cells, but smartcells have sent some samples for transplant already and i've been told they were sucessful.

I got the feeling that the people on the stand for uk cord blood bank didn't know what they were talking about. as a company they might actually be great, but they were not well represented, so i struck them off the list.

I liked future health as well, but they dont organise the private nurse which i need for queen charlottes.

my ds/dd is due in 10 days... I CANT WAIT!!!

[QTPie]

Thank you very much for your replies.

I am so sorry for your loss, chegirlknowswhereyoulive - that is unbelievably sad

BeckynSteve, funny you should post this now... I did sign up with SmartCells on Monday. I found it incredibly hard to choose, but SmartCells seem the most customer service focussed (both at the baby show and in answering my queries, by phone and email since).

The UKCBB seemed more "sciencey", but didn't seem to offer a Phlebotomy service (which we may need): I agree that they were not as well represented at the baby show. Plus they are not licenced to our hospital.

We hope to have the baby at St Johns and St Elizabeths hospital (London), but they only take women from 36 weeks gestation and we intend to move to London at 37 weeks (staying at the in-laws house in St Johns Wood). If everything goes to plan, then the baby will be born in John and Lizzies and they are licenced to extract Cord Blood for SmartCells, Cells4Life and Virgin. If things don't go to plan (and we deliver near home in Bath), then we need a Phlebotomoy service...

I ruled out Virgin for some other reason (don't think they store the cells as long). Then Cells4Life seemed very impressive, BUT there customer service isn't very pro-active: i.e. you were "on your own" to work out the Phlebotomy queries and arrangements (despite them doing a "Phlebotomy inclusive package"...)

So we went with SmartCells (who have been very helpful and done the legwork for a "standby Phlebotomist" if we don't deliver at John and Lizzies). Let's just hope that there after sales service is as helpful and efficient (although I hope that we never need it!).

I have just received the SmartCells pack and now need to read through all of the paperwork and ensure that everything is ready and husband thoroughly understanding what to do when the time comes...

Thanks
QT

[BeckynSteve]

Hey QT - that's some great feedback about smartcells... makes me feel better about my decision. I'm due any day now (i hope) so i'll let you know about the after-sales support with the couiers etc.

[QTPie]

BeckynSteve

Best wishes for your birth and (when you have recovered) would LOVE to hear about your experience with it... I am not due until 31st Jan.

I need to go through all of the paperwork and process with husband and make sure we know "what's what" - any input from you would be invaluable.

Enjoy your new arrival

QT

[CokeFan]

We went with cells 4 life www.cells4life.co.uk/

They seemed ok - someone in our NCT group had used them a couple of years before. They recommend phlebs direct (and will give you the details) but you have to sort out the phlebotomist yourself.

We had an "interesting" experience. It all worked out in the end but the phlebotomist was coming from Wales (to the RUH in Bath) and ended up going the wrong way down a one way street (with a police car coming the other way).

The cord broke after DD was born so I had to have the placenta removed in theatre. Fortunately there was enough blood in the cord itself to be stored. The "maternal sample" they took from me turned out to be insufficient though. Apparently, if we ever need to use it, they'll just test some of the cord blood.

[QTPie]

Interesting, CokeFan

Our "back-up" hospital is the RUH in Bath - so that is where we could need to use the Phlebotomy service... So you didn't have a problem, at all, with the RUH allowing the Phlebotomist to take the sample? That is good to know if I have to deliver there...

Now (when I contacted them a couple of weeks ago), Cells4Life use 3 Phlebotomy services and you have to "choose and sort the Phlebotomy out yourself" - which I found quite off-putting. Trying to work out and choose a CBB service was enough of a struggle ("pregnancy brain" is making decisions rather difficult... ), to have to choose and sort out Phlebotomy on top of that.... .

That is why SmartCells won out - needed something easy and their customer service was very helpful and responsive.

Hopefully none of us will have to use it, but "nice to have" just in case...

QT

[CokeFan]

QT - I wouldn't say it was easy exactly. It was a bit of a pain having to sort out and coordinate two things (although to be honest DH was in charge of that bit). We had 48 hours to get the kit back to cells 4 life and we had to arrange for the courier to pick it up (from RUH or Paulton, depending on where I ended up) so I can understand why you'd go with the SmartCells one. Cells 4 life say they're the only company that stores whole blood - not sure how that's supposed to help though.

The RUH didn't have a problem with someone coming in. I think the rules at the time were that you could have 2 people with you, but they had to be the same two people (so no swapping people in and out). I don't have any family nearby so it was just DH anyway. The phlebotomist was allowed to wait in the family waiting room bit - she told us to update her when labour was starting and then again at 7cm. She was really nice - got all the blood from the cord ok and then got my blood sample when I came out of theatre after having the placenta removed. I think if I'd known someone personally that could have done the phlebotomy bit it would have been a lot easier.

I went to Paulton after a couple of days in RUH. They're really nice at Paulton - got BF sorted for us (still going at 15 months). RUH did the job but wasn't much fun - v hot, v noisy and v busy.

[nc68]

does anyone have experience with either the phlebotomy clinic or phlebotomists direct (phlebs direct)?

our local hospital has told us they cannot take the stem cell sample for us and baby is due in about three weeks

[Fibilou]

Why not just wait for the cord to stop pulsating before cutting the cord ? Then the baby gets all the blood, T cells, lymphocytes etc that they should have from the cord anyway and cord blood banking is redundant.
Can't believe that we have made an industry around something that only happens because of medical intervention.

[GracieGirl]

I'm 35 weeks and was considering using Virgin Health Bankwww.virginhealthbank.com They store the stem cells for 20 years. Its £1470 of which you only pay £150 until they have safely received a useable sample. Apparently the kit comes with the phone number of the 24 hr courier to send the sample to them. I don't live in London so I need to ring my hospital to see what response I get regarding them taking the cord blood sample.

Thanks for the info on other companies, I will check them out. How much extra cost would using a phlebo service be?

[nc68]

i believe it is about 275 pounds for this

[CoteDAzur]

We used Future Health for DD 4 years ago and they have been very professional all the way.

[CoteDAzur]

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

[QTPie]

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...

QT

[nc68]

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)?

[cityangel]

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.

[BeckynSteve]

Hi All,

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.

[smilehomebirth]

www.beyondconformity.co.nz/_bpost_1598/The_ethics_of_Cord_clamping_and_stem_cell_collection

[QTPie]

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!).

QT

[Muitan]

Hi,
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?

[mamababa]

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

[pregnantcitygirl]

Hi there,

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/