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Original poster

Cord blood banking - any opinions / experiences?

36 replies

alicet · 15/01/2006 21:03

My hubby and I are trying to decide whether we bank the cord blood of our baby when he is born incase he develops a disease where he needs it in the future. This is expensive (about £1200 give or take £200) and the odds of needing to use it have been quoted as between 1/1000 and 1/20000 but a part of me feels that I would find it very hard to cope knowing I didn't do it if he DID need it. Then I get angry that these companies are playing on my paranoia!!!

We really don't know what to do - does anyone have any experience of this?

OP posts:

Are your children’s vaccines up to date?

Set a reminder

jstbcs · 15/01/2006 21:04

If you have the money, and you are nto going to miss the money, then do it... You never know....

hunkermunker · 15/01/2006 21:05

Check your hospital do this - some don't support it.

MeAndMyBoy · 15/01/2006 21:22

If you have the money and can afford to do it. My brother has cancer and diabetes and we were seriously considering doing this so he could benefit from it it needs be.

He checked with this consultants and their opinions 2.5 years ago was that it wasn't worth doing as the techniques were very experimental. However I will seriously be looking into doing it this time round not only for my brothers sake but also for me, DH and kiddies if neccesary.

Good luck with your decision. Just look on it as any insurance policy that we pay into - and cheaper than most as you don't pay every year just a one off.

H x

MerlinsBeard · 15/01/2006 21:28

did this really need posting more than once i wonder?

MeAndMyBoy · 15/01/2006 21:33

is there another thread running about it?

Original poster

alicet · 16/01/2006 13:26

Thanks for all your (mostly) helpful comments...

meandmyboy - hope your brother is doing OK and good luck with your decision. If you wanted to check out the other threads see below...

mumofmonsters - I don't apologise for posting more than once (also in pregnancy and news) as I thought this was the best way of getting lots of different viewpoints - I'm guessing most people don't read every section. You don't have to read more than one if you're not interested!

hunkermunker - that's a good point and your absolutely right - my hospital wil let us do it but won't promise to help. So my hubby will have to collect the blood if we decide to do it. Apparently the kit you get is pretty foolproof and comes with good instructions though...

I'll report back on what we decide and let you know how we get on if we go for it....

OP posts:

MeAndMyBoy · 16/01/2006 14:17

Please Alicet I would be interested to see which way you decide to go and how it goes if you do go for it.

Yes brother is doing ok for the moment, though don't know how long that will last. With his luck probably not long
Good luck and look forward to reading your birth announcement soon.

h x

TinCan · 16/01/2006 16:43

We are leaning towards doing this and our doctor is supportive. However, based on conversations with my doctor, the collection process is not nearly as easy as the brochures/companies make you think. My doctor mentioned that it can be quite a delicate and somewhat time consuming (i.e. 20 mins) process. He specifically stated that the banking companies advertise that the process is simple and foolproof, but that is more of a marketing ploy than a reality. I would caution you to discuss this with your doctor/midwife to confirm if it really is feasible for you to do the collection yourselves.

Original poster

alicet · 18/01/2006 16:56

Cheers for that tincan - worth knowing! I think I need to look into the practicalities a bit more.....

OP posts:

Stacey3688 · 14/08/2006 17:26

Baby due in 5 weeks. Picked up a leaflet on Cord Blood Banking - has anyone had experience with this recently?
Does anyone think it is worth doing, or am I being sucked into more baby marketing!!

BeckynSteve · 30/07/2009 18:08

Hi, does anyone want to start up this debate again. I know everyone on here now has toddlers but I am preg for the first time and considering cord blood banking. I've been told that the laws and regulations have changed alot in the last couple of years and I would be interested to hear how things went for you all 3 years ago. did you do it? what was the experienc? would you recommend it?

chegirl · 30/07/2009 18:24

I wanted to donate my cord blood. My son was born in Dec08. My daughter died from luekemia in April 2004, without a bone marrow match. Cord blood is a good alternative to bone marrow.

I did not live near enough any of the NHS collection services.

I went to the DM because I knew they would print my story. A private company did it for free. My cord blood is being saved but I really wanted it to be for public use. The NHS wont accept it because they didnt collect it.

I had a home birth and my friend was there. She is a student midwife. Its not painful but its a bit fiddly and I can see why midwives are a bit reluctant to take it on. It would be very time consuming in a busy labour ward.

I'm not sure about collecting it for private use. the chances of you needing it are so low. But it SHOULD be collected on a national basis. No question.

BeckynSteve · 03/08/2009 17:25

thank you for replying chegirl.

i just looked on mailonline and I found an article about donating to Kings College (www.dailymail.co.uk/health/article-1056300/How-blood-babies-umbilical-cords-save-life-adults .html)

Unfortunately i am going to queen charlotte's so i think private storage is my only option there.

the companies i've spoken to say it's quite an easy procedure, but your friend says it's fiddly... this whole thing is so confusing. who are you supposed to believe? my midwife knows nothing, my consultant won't make a recomendation. it's so hard!

Longtalljosie · 05/08/2009 18:14

I did a story on this (I'm a journalist) and interviewed someone who donated. She says she didn't even notice it happen. There's an extra midwife who takes the cord after it's been clamped and cut, and empties it. It's done away from you, so to speak.

It's a real shame there are so few places that allow you to donate cord blood. In fact, where I'm sue to drop (Watford) is one of the places that does, so after doing the story I've decided I want to donate.

Have a chat with the Anthony Nolan Trust about the benefits of private donation. Certainly one of my interviewees (and I think it was the AN Trust although it was over a year ago and I can't remember for sure) was saying that if you did go on to develop a blood-related condition, you'd be better with a matched donation from someone else who didn't have the condition, than your own cord blood. That said, I guess at least with your own cord blood you'd be guaranteed a match.

Longtalljosie · 05/08/2009 18:15

sue = due - sorry.

BeckynSteve · 12/08/2009 16:36

hmmm thanks Longtalljosie. I would love to donate, but i can't at my hospital. What did you mean about private donation? forgive me, but do you mean provate storage? wouldn't i have to have my baby at kings or at watford like you?

Longtalljosie · 12/08/2009 17:31

I do mean private storage, sorry. For donation, yes it would have to be Kings, Watford, Barnet, Northwick Park or Luton and Dunstable.

This may be worth a read

BeckynSteve · 12/08/2009 18:12

Thank you - that is very helpful indeed. I'm pretty sure i am going to do it now even if it is private. I'm due to have my baby at queen charlottes. Smartcells have a service where they send someone to the hospital to collect the cord blood which i will have to have b/c the hospital dont collect at all, let alone for donation! oy vey! as a journo do you have any opinion on the private companies? although i have chosen smartcells in principal i haven;t paid anything yet, so can always change my mind!

chegirl · 12/08/2009 18:21

beckynSteve we are on Mail online somewhere with that article. I knew they would publicise my cause because they love a medical story

When I said fiddly, I am talking in the context of a busy NHS labour ward where you are likely to be sharing a midwife with several other women. In my case I was at home so had two midwives plus my friend. It was the first time any of them had done the procedure.

The private firms usually send out someone experienced to do the procedure. It didnt cause me any difficulties btw.

Longtalljosie · 12/08/2009 18:46

No, I didn't really look at the private companies. The story itself was a private members bill introduced in the Commons on expanding information on NHS cord blood donation.

It was quite a complex story anyway as it had to take in what the current provision was, what happened when people donated, what that experience was like, and the scope of the current provision - plus what was in the bill itself.

The only thing I referred to on private storage was the point made above (and in that link) about private storage not necessarily being the best bet if you had a blood disorder.

chegirl · 12/08/2009 18:51

What was the MP's name that introduced the bill? He is from Enfield isnt he? He said my DD's name in the House.

Longtalljosie · 12/08/2009 19:48

Yes, that's right - David Burrowes. I think you'll find the speech on his website. It sounded from talking to him that you and your daughter were quite an influence on him. He seems to be quite involved in the issue now.

chegirl · 12/08/2009 20:36

Really? Thats lovely. Its something I guess. I got a bit obsessed when I was pg with DS3. I had to come off the blood and bone marrow register and was really upset and was determined to do something whilst pg. It felt like banging my head against a wall for quite a while. Maybe one day it will have made a difference. I hope so.

Longtalljosie · 13/08/2009 10:10

It does seem ridiculous to me that the places where you can donate are so close together. I guess the general shortage of midwives can't help.

If I do get to donate (and have been warned if I give birth in the middle of then night or at weekends, I may not be able to!) I'll be thinking of you and your daughter as I do x

chegirl · 14/08/2009 14:43

Thank you Longtall thats very sweet. I worried about the timing as my DS was due on boxing day! Worked out ok though.

Good luck.

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