Cord Blood Storage/Donation

[Melbo]

Hi Ladies,

I wasn't sure where to post this.

Just wondering if anyone has any experience of private cord blood storage? I was very keen to donate Willmartin's cord blood to the public blood bank but have found out it is not possible (you have to have your baby at a certain hospital during certain hours apparently!).

The thought of saving it for his own use only came up recently. I'd be interested to hear from anyone who has made that choice or considered it.

Cheers,

Mel

[Schmickers]

As someone who used to work in paediatric oncology, I thought I'd comment...

Current technology surrounding the use of cord blood means that it is not able to be used for the child that donated it. It does have potential uses for your other children, though.

By far the most common use for cord blood is to re-create the bone marrow system after a bone marrow transplant. Bone marrow translpants can occur for a number of reasons. Some leukaemias have to be treated with a bone marrow transplant because the leukaemia (which grows in the bone marrow) cannot be treated without destroying the rest of the marrow. In such a case, you need a new source of what are called stem cells or immature cells which can develop into bone marrow. Cord blood is a fantatic source of stem cells, and cord blood from a genetically matched and related donor has the lowest chance of causing serious side effects. Bone marrow transplants can also be used to treat a variety of other genetic disorders.

New technologies in the future might make stem cells from cord blood useful for the child who donated it. Future technologies which might use cord blood for the child's own benefit include manufacturing new tissues or organs that are a perfect genetic match to the individual, although new technology seems to indicate that such technology can be grown from adult cells.

So, donated cord blood can be useful fro other children on the family, and if donated through the Australian Red Cross Blood service, can possibly be of use to other children looking for a donor for a bone marrow transplant, but as current technology stands, is unlikely to be of use to the child who donated it.

[Melbo]

Thanks Michael. I've been on the bone marrow donor registry for many years myself so have always found this topic of interest. I really feel for those needing a transplant because it is so hard to get that match. Hence, I was very keen to donate the cord blood from this pregnancy.

The fact that it can't be used for the child who donated it is interesting, considering that the companies providing private cord blood storage are quick to promote the bone marrow transplant angle as a possible use. The way I was thinking, the BMT was the most likely reason I would think about storing Willmartin's cord blood. Not sure if we will have other children yet (who knows... we may get lucky) but if it can't help him for that reason I don't see much use now in paying for that service. The future possibilities are interesting though.

Thanks for that insight.

[Tracey]

I had Indah in apublic hospital & donated the cord blood, but you are not charged for it, which I have heard Private hospitals do?
I would be delighted to think Indah's cord blood helped another child or anyone really...

[Schmickers]

As I understand it, donating the cord blood for public use incurs no charge, but you are not given preference to access it - it becomes the property of the Red Cross Blood Bank and tey will donate it based on need.

If you choose to store it for your own use, you need to go through a private company, and thet incurs a charge.

[Rouge]

Yeah we looked into it and donating is free but storing costs money regardless of hospital.

With Paris we did want to donate it but it was only a new procedure and they weren't doing it at every hospital. This time around I'm hoping the cord blood can go back to Seth

*hugs*
Cailin

[Beckibee]

Mel, I had the same problem. I wanted to donate Maddy's cord blood but was told I had Maddy on the 'wrong' day to do so! They only collect on one day a week. Bummer.

[Juliette]

We looked into private cord blood storage (as we live in rural Qld, we can't donate to the public bank). It is REALLY seriously expensive - no matter where you live. Needlessly expensive actually. When we looked into it, it was $3000 + just for collecting it from the hospital (I realise there is time and effort involved in travel, but the proceedure itself it relatively simple) and then you pay $800 a year to have it stored. It's a rort! I hate that it plays on our sense of wanting the best for our children - the pamphlets make it sound as if you could be risking the child's life if you don't do it!!! As Michael has pointed out - that's far from the truth. But it doesn't stop them exploiting people. I would love to have done it for Hannah - 'just in case' there should ever be a need for it, and technology has progressed enough for it to be of use to us at the time, but we just couldn't afford it.

[Tracey]

:-k I think in the pamphlet I read it said something about they keep it for up to 5yrs for our family but any time after that it can be used for others & if it hasnt been used it will be given to us as required/needed... Although I am praying we never need it.. If I can help anyones child I am more than happy to do so....

[Kelly W]

Michael

You might be able to answer this question for me - I am having twins and was going to donate the cord blood, but I heard from one midwife that they don't collect it when from twins - I thought this was strange as for one collection they would get twice as much so it would be worth it.

Our hospital collects Monday -Thursday so hoping there is a high chance that our babies will be born on the 'right' day to donate.

Re paying for storage for yourself I have heard of families pitching in together to pay to store the cord blood when they have a history of Bone Marrow or other diseases that it might help with so if it is needed it might be able to help other family members.

[littlerigger]

Just thought I'd pop a note in here that I'm in the ACT and looked into donating cord blood and there's nowhere in the ACT that does it

[Jennifer13]

Hi all

We have decided to store the cord blood with a private co and the total cost is just under $3000 which includes 18 years of storage, after which it's the property of the child and they have to consent if it is to be kept for longer. My understanding is that the stem cells are not just used for bone marrow transplants, but are used in the treatment of some cancers, like leukemia, and that is for both the child and any siblings who are a match. As this is new technology there isn't really much understanding yet of how extensively it may be able to be used. Our hospital also gave us a form to donate the cord blood to a public bank if we didn't want it ourselves.

The company we went with also offers payment plans up to 12 months if you can't afford it up front, or for when the baby bonus is paid. It is worth mentioning though, you have to get consent from your ob and have at least a deposit paid before the birth (around 35 weeks they indicated was normal, but we are paying at 37-38 just 'cause it took me too long to fill out all the paperwork!). They send you a box with all the collection stuff in it that you have to take along with you to the hospital. Makes no difference, by the way, if it's c/s or vaginal birth, and you can do it for twins as well (doesn't cost twice as much).

Last thing is if you have other children they give you a discount down the track if you collect the cord blood again. Also, they do have some kind of a refund scheme if the blood can't be used for some reason when you need it. Our ob also gets a small payment for every collection he makes (but it's only $50 and he volunteered this information, I'd check if you thought your ob was pushing a particular company and they were more expensive though).

Hope this helps!

[BellyBelly]

BellyBelly has an article on the main site about this and you may want to google past discussions. The only thing I think you need to be aware of is that I think they need to cut the cord straight away so they can have all of that blood, so if you want the cord to stop pulsating before it is cut, you can't have both. I am very sympathetic to the cause - it's very honourable to donate cord blood. I have chosen to let the cord stop pulsating first, as it's alot of blood in those placentas. For a small baby not to have that blood makes the decision harder for me - but they usually take the placenta away from me to test anyway as I am rhesus negative. Next time I will be more stern with that!

[An72]

I really feel for those needing a transplant because it is so hard to get that match. Hence, I was very keen to donate the cord blood from this pregnancy.The fact that it can't be used for the child who donated it is interesting, considering that the companies providing private cord blood storage are quick to promote the bone marrow transplant angle as a possible use.

I can relate well to this. Cord blood registry is important so that safety and protection will be assured for the people who will avail of the procedure. Once cord blood is donated, it should be registered in the National Cord Blood Registry so that the stem cell match, details, and other information are preserved. This will allow for a perfect match to be found easily for those in need of cord blood. Public cord blood banks will usually relinquish ownership of the cord blood once it is donated, but the registration will still exist. In case the child, whose cord blood has been donated, needs his own cord blood one day, then the bank can still give it to the child if it has not yet been used yet. This easy process is possible because of cord blood registry. For private banks, it is even more important that cord blood registry be done to ensure that the stored cord blood is matched to the owner and once it is retrieved. Cord blood registry will ensure that the stored cord blood is itemized properly and will go to the right owner.