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Original poster

Is anyone thinking of storing their baby's stem cells? Advice needed!

38 replies

LilyCam78 · 23/08/2012 15:21

Congratulations all you pregnant girlies out there, mine is due on the 30th January, so excited!

My husband just got a bonus at work and we were thinking...holiday or we could do something super sensible and decide to store our baby's stem cells. What do you guys think about it, have you looked into anything like that? Didn't know it even existed until I came across it in a forum. Looks to me like a good thing to do...if you have the money that is, but I'm still undecided.

Help! What do you think? The company I'm looking at is Cells4Life www.cells4life.com, looked at other companies too but that one seems to store more stem cells.

Any opinions on this would be greatly received!

Loves, Lily-Mai xxx

OP posts:

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NattyCraig · 23/08/2012 15:34

Hello,

I really like the idea of storing babies stem cells, but unfortunately we just don't have the money at the moment to do so (have just bought house, new car etc and obviously baby things)

I just think prepareing for the future is a good idea and the what if's that could happen. Also science is coming on so much that they will be able to do so much with these cells should they be needed in the future.

We can't afford to store ours but I would donate them if my hospital offered the service to (which they don't)

Congrats on your pregnancy :) I'm due on the 1st November (30 weeks today)

Original poster

LilyCam78 · 23/08/2012 15:41

Wow! Not too long to go then! Good luck with everything!

That's the thing isn't it, everything seems to need to be bought all at the same time. We're trying to save for a house at the moment but it seems to take so long, mega frustrating!

Looks like they can do so much with stems cells and then with regenerative medicine in the future too. Hoping they won't ever be needed but it's nice to think the option is there just in case. I've become such an emotional worrier since being pregnant!

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NattyCraig · 23/08/2012 15:51

I'm the same, I resarch everything to do with pregnancy / items I buy for baby etc...

Stem cell storage was something I looked into early on but just not affordable for us at the moment, I definately would though as like you have become a bit of a worrier and would like to think should they be needed they are there for us.

Good luck with the rest of your pregnancy! Hope it has all been smooth so far :)

Original poster

LilyCam78 · 23/08/2012 15:55

Think the worry might come hand in hand with being pregnant, I'm driving my husband insane!

Luckily my pregnancy has gone pretty smoothly, haven't even had sickness...phew! Take care x

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PragmaticWench · 23/08/2012 17:20

Have you looked into delayed cord-cutting? It's meant to be a really good way to get lots of blood and nutrients into the baby with little hassle, but it does mean you wouldn't be able to save the cord as they like to clamp it fast if storing stem-cells. Not quite what you asked but it is a thought.

For me, I decided it was more likely the baby would need those initial nutrients/blood than possibly would need stem-cells at some point later. It's also free which is nice!

Original poster

LilyCam78 · 23/08/2012 17:24

Ooh I haven't heard of that at all! Learning new things every day. I'll have to look into that one, sounds really interesting...like the sound of free too!

OP posts:

Solopower · 23/08/2012 17:31

Congratulations on the pregnancies!

What would you use the stem cells for? (Excuse my ignorance)

CokeFan · 23/08/2012 17:32

We've used Cells4life. They were fine - send you a kit through the post etc. You have to arrange a phlebotomist to do the collection (unless you know a nurse who could do it for you) and take a blood sample from you and then you've got to meet the courier to get the kit back to them within a certain time limit.

Mine wasn't exactly straightforward (cord broke and I ended up in theatre to have the placenta removed). They managed to get whatever they needed though. My blood sample was also insufficient (no idea why) but they said that wasn't a problem because they'd test the sample again if we ever needed to use it.

Obviously if you move house in the next 25 years you need to tell them your new address.

Jergens · 23/08/2012 19:42

Can I ask what the going rate is for cell storage?

loveschocolate · 23/08/2012 19:48

I would donate the cord blood to a tissue bank (not an option where we live)but we're not considering storing them for individual use. This is despite my father having his life saved by a stem cell transplant (they extracted his own after chemo) following a relapse for acute myeloid leukaemia. I'd want to know how long they are viable for (doubt my fathers would have been much help at 56 years), what conditions they could be used to treat and survival rates vs other treatments. It may depend on ethnic background though as this will influence availability of donor cells should you require it.

TruthSweet · 23/08/2012 21:05

I wouldn't purely because they are my baby's stem cells and they are there for a reason (even if we aren't too sure of it yet).

This really clarified things for me as to why I felt uneasy about cord blood banking.

expatinscotland · 23/08/2012 21:09

One's own stem cells are not able to be used to treat most of the conditions for which stem cell transplant is necessary - the blood and bone cancers leukaemia, lymphoma and myeloma; blood conditions such as aplastic anaemia, etc.

Because these conditions are strongly suspected to be genetic in origin and giving you back your own stem cells means giving you back whatever it was that caused you to develop the condition in the first place.

Seems rather pointless to store them.

louisianablue2000 · 23/08/2012 21:12

I'm a scientist and wouldn't waste my money, there are very few stem cells in the cord blood so the chances of getting something useful in future is very low. Have delayed cord clamping (think the guidance has just changed to recommend delayed cord clamping as standard now) which is free and has clear benefits.

LynetteScavo · 23/08/2012 21:24

I considered it when pregnant with DD.

I decided against it, but did insist on delayed clamping.

If I were to ever write a birth plan again (highly unlikely!) the only thing it would have on it would be that I'd like delayed clamping.

Original poster

LilyCam78 · 24/08/2012 13:06

Hi Solopower. Awww I don't think you're ignorant, I had no idea what they were either until I read up on it.

From what I can gather, stem cells are the most basic type of cell which means with the correct stimulus, they can turn into lots of other different types of cells. At the moment they're using them to treat heart disease, cancer, bone fractures, burns, strokes, multiple sclerosis, Alzheimer's disease, Parkinson's disease, Huntington's disease, diabetes and regenerating organs which I think is amazing! I think the NHS use them in transplants at the moment but because they come from another person and not yourself, there's a massive chance there won't be a 100% match and your body will reject the treatment. With your own stem cells it's a 100% match! These storage companies provide a kit to collect the stem cells and then basically freeze it at -200.

I looked at 'Reduced Volume' storage and 'Whole Blood' storage and it looks like the 'Whole Blood' one collects more stem cells in total.

Looks like it costs £1695 which is a lot but I guess I'm seeing it as a bit of an investment. It's so hard to know what to do, I swear I become more and more of a worrier every day through this pregnancy!

CokeFan, sounds like you had a bit of a nightmare time at the end of your birth. :S Glad it all worked out ok in the end. How long did it take for your courier to arrive?

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loveschocolate · 24/08/2012 13:19

While they are a 100% match there is also the possibility that the abnormality that caused the problem will re-occur as someone has already pointed out. The success rate with own stem cells for treatment of adult leukaemia is lower than for donor transplant. It very much depends on your age though. If you're younger then the donor transplant makes more sense. My Dd elected for the own cell transplant despite the lower success rate because of his age increased the risks for the donor transplant. 6 years later his consultant has told him that was he in the same situation now as he was then the protocol has changed in favour of donor transplant. Be critical of what you read - they are not a wonder treatment. In addition many of the conditions you've listed are diseases of old age and the chances of the cells surviving that long have to be questioned. In addition medical science will have moved on considerably in 60 or so years.

expatinscotland · 24/08/2012 13:22

Since at present, stem cells cannot be washed out of cord blood - this is in the early stages - there is also a weight threshold for using them for transplant.

Of 35kgs.

And again, they won't be used for any condition which is known or suspected to be genetic in origin.

Original poster

LilyCam78 · 24/08/2012 13:25

Thank you so much guys for all the advice, it's so good to get a balanced perspective rather than just the sales people at the end of the phone. Definitely going to explore all my options. Really appreciate hearing all of your experiences.

OP posts:

expatinscotland · 24/08/2012 13:29

'I think the NHS use them in transplants at the moment but because they come from another person and not yourself, there's a massive chance there won't be a 100% match and your body will reject the treatment. '

Not true at all. Depends on a huge number of factors. And again, they will not use your own cells, or even those of an identical twin, in the majority of cases in which transplant is necessary because of the risk of relapsing the condition which caused you to need a transplant in the first place.

Original poster

LilyCam78 · 24/08/2012 13:36

Oh right, that's really interesting. So I wonder what the actual benefit of storing your baby's stem cells actually are then? Do you think there are any? Maybe it is just a waste of money.

OP posts:

BeckyBlunt · 24/08/2012 13:41

We did it, on the grounds that you never know what science is going to be able to do with them in the future, and we'd rather not rue the day that we considered it and didn't do it...

PebblePots · 24/08/2012 13:51

The blood in the cord is part of the baby's blood quota people. You should allow the cord to finish pulsating before it is cut to allow the baby to get it all. Do some research before deciding to deprive your baby of this!

Original poster

LilyCam78 · 24/08/2012 13:56

Who did yours Becky?

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expatinscotland · 24/08/2012 14:52

There isn't any. Any scientist will tell you this. The stem cell research that is being done is still in its very early stages and again, your own stem cells will not be used in any condition which is known or strongly suspected to be genetic in origin as there is quite a bit of evidence now to do the contrary. And now, it's being revealed or know that most of these conditions, such as Huntingdon's, are genetic in origin.

Once gene therapy progresses, and again, this is YEARS away for many conditions, perhaps it wil become possible to use one's own stem cells to treat them. But, too, it's also being researched that cord blood may not be the only source of stem cells.

My daughter had a stem cell transplant as treatment for acute myeloid leukaemia.

Neuroblastoma patients and some other solid tumour patients get their own stem cells back as part of what is known as 'rescue' since their treatment protocol is known to destroy bone marrow function in many cases. BUT, there is now mounting evidence that it might be of more benefit for them, too, to have allogenic transplant and indeed, I know of one relapsed neuroblastoma patient who is having haploidentical stem cell transplant using her mother as a donor.

Think about it, if the condition is genetic in origin it doesn't make sense to use your own cells to treat it unless there is a means to isolate where the condition's origins are within your own genotype and delete them.

This is not possible now and won't be for some time.

BeckyBlunt · 24/08/2012 16:26

Cells4life again. All fine apparently; wasn't really aware of any of it happening at the time...

I guess that you could potentially use healthy cord blood some time in the future to help an ill sibling / family member, but realise that it's very early days. We could afford it, and we were hedging our bets, happy to spend and take the risk that it might not be worth doing.

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