Stem Cell Collection

[fi1980]

Hi

Just wondering if anyone has any experience with stem cell collection? We are currently considering it but are a little unsure about it. It is rather expensive but I don't want money to be a barrier, after all if it could save your child's life you really can't put a price on it.

Has anyone else done this or arranged to have this done? Any thoughts, experiences, recommendations etc would be greatly appreciated.

Thanks

Fi

[Schmickers]

There are a few things you should be aware of before you go ahead with it.

The stem cells you collect are unlikely to be useful for the child itself - they are usually used to treat a sibling who has some sort of bone marrow abnormality or leukaemia.

There is also mounting evidence that it is quite beneficial to give the baby his or her cord blood at birth by delaying cord clamping. There is an article on this on the main BB site: https://www.bellybelly.com.au/birth/...-cord-clamping

Tirdly, as you said, it is quite expensive. The potential benefit is certainly there, but only for the child's siblings, not the child itself.

Good luck in making your decision.

[Trillian]

This is from the birth website;

Use for siblings

Many parents are curious to know if the cord blood they donate can be used for this child (if they develop leukaemia later in life) or their sibling(s). This will depend on the circumstances.

This child later in life. Cord blood donated at a baby's birth is usually not used for that same child as a transplant if they develop leukaemia later in life. The cord blood would not be used (even to donate to another child), as there may be a predisposition to leukaemia from birth, meaning that the cord blood could contain leukaemia or cancer cells. It is preferable that your child receives cord blood from another donor. The Cord Blood Bank would need to know if your child developed leukaemia later in life, so they do not offer the blood for donation.

A younger sibling donating for an older child. It is possible for a second baby to donate cord blood for an older child who is suffering from leukaemia or cancer. There is a 1 in 4 (or 25% chance) that the new baby will be compatible with their older sibling if both are from the same parents.

An older child's blood being kept for a potential younger sibling. This is not routine, especially if the cord blood is required by someone else in the meantime and could be used for donation. There is also the issue that even though the blood is set aside, your family may never need it, either because you do not have a subsequent child or that child never becomes ill. If you have a family history of leukaemia, you may be able to discuss this issue with the ACBB and see if some arrangement can be made. Sometimes the cord blood can be stored and put aside, usually for a small fee, by some private companies. The Cord Blood Bank Service does not usually store blood for private use.

And this is an interesting bit of info, including a transcript, from when Catalyst did a show on it back in January.

How to bank your babies blood - Private or Public?

The new liquid gold in medicine is cord blood, but this tiny amount of blood in the umbilical cord connecting mother and baby is causing an uproar. Parents are being offered the chance to store their child?s core blood, either in a public bank for public use, or in a private bank, for use only by their own child. Catalyst reporter Paul Willis investigates the dilemma that has sprung up around how to bank baby cord blood - Private or Public?

Until recently Cord Blood was discarded as waste at birth, but now it?s been found to have the ability to cure diseases like leukaemia. But because the genetic problems that caused the child?s disease are very likely be present in their own cord blood, most are cured using cord blood from another child, supplied from a newly established Public Cord Blood Bank.

But because Cord Blood contains stem cells parents are also being offered the option of storing their babies cord blood in a private bank. Stem cells are those incredible cells that science says are the future of medicine, they hold the potential to cure many diseases ? but only if you use your own. That?s why the private cord blood bank is attractive. But by putting your child?s blood in a private bank it is being locked up and denied to the people who could use it to cure their child?s disease right now. Parents have a difficult decision to make, least of which is what happens if the private blood bank goes bankrupt? It?s already happened in the US.<H1 id=transcript>TRANSCRIPT

Narration: After 7 hours of labour, baby Claire has finally made her way into the outside world. But the start of this tiny life could also hold the key to saving the life of someone else. The blood from Claire?s umbilical cord, once discarded as waste, is being heralded as liquid gold, able to cure diseases such as leukaemia.

Prof Marcus Vowels, Australian Cord Blood Bank: Cord blood happens to be extremely rich in stem cells that can be used as a cord blood transplant in the same way as a bone marrow transplant.

Narration: But this precious source of stem cells is causing an uproar. Until just over a year ago cord blood could only be donated to a public bank for use by whoever needs it. But then Cryosite, Australia?s first private cord blood bank, set up shop. They will, for about $4000, lock up your baby?s cord blood for his or her exclusive future use.

Prof Ron Penny, Cryosite: We?re offering the opportunity for people who want to store cells for the future to be able to do it.

Narration: Now families are being offered a difficult choice. Public or private?

Dr Shane Higgins, Royal Women?s Hospital Melbourne: I just don't believe that there is sufficient scientific evidence for us to recommend to patients to privately store their baby's cord blood at this point in time.

Narration: Adele has donated baby Claire?s blood to the public bank.

Adele: I felt that donating to the public bank there would be 100% usage of the cord blood, whereas the private donation it would only be used for our child.

Narration: Rachel and Tim have banked their son Rupert?s cord blood privately with Cryosite.

Tim: Rachel will probably accuse me of being a control freak, but I like to have control of these sorts of things, and I?m happy to pay for it.

Narration: So the question is, what are the scientific pros and cons in the public vs private debate? Professor Marcus Vowels heads up the public Australian cord blood bank at Sydney?s Children?s Hospital.

Paul Willis: So what are we looking at here?

Prof Marcus Vowels: Here we?re looking at the bag that is going to be separated. We?ve got the stem cell layer that is on the top and that?s the white area.

Narration: Cord blood is a rich source of stem cells, which can turn into any kind of blood cell and repopulate a damaged immune system.

Prof Marcus Vowels: It keeps the baby alive while in the womb, but then it can be used to save the life of another person as a transplant.

Narration: The Wilson Family owe their daughter?s life to just such a transplant.

Cheryl: When she was about three months old we realised that she had something that was life threatening, and that there weren?t many options for her.

Narration: Anna suffers from a rare immune deficiency disease that would normally be fatal. Thirty nine days ago she had a cord blood transplant.

Paul Willis, Reporter: Day 39 and have you as parents noticed any change in Anna?

Cheryl: Oh absolutely yes.

Paul Willis: What?s the difference?

Cheryl: Her blood counts are up, she?s got a normal level of white cells in her system.

Narration: But finding a match for Anna wasn?t easy.

Cheryl: Initially they tested family members and the two of us and the boys, but nobody was a close enough match

Narration: In fact there was no match in Australia, and they eventually got a cord blood from overseas. So what would have happened if the Wilson family had stored Anna?s cord blood privately at birth?

Bronte Wilson, Father of Anna: If Anna?s cord blood had been locked away it would actually be of no use in curing Anna, because of her illness anyway.

Narration: This is the major scientific problem with private cord blood storage. Most diseases, like leukaemia, that can be treated by cord blood, should not be treated by an individuals OWN cord blood.

Prof Marcus Vowels: I don?t see any role for the use of cord blood stored for an individual. Their cord blood is totally unsuitable because it contains the disease that we?re trying to eradicate. You need to use someone else?s bone marrow or cord blood.

Narration: But cryosite argues that by banking their baby?s blood privately they?re investing in the future of stem cell technology, not a cure for leukaemia.

Prof Ron Penny: If you look at the material that we have produced carefully you will see that we have not over-emphasised the use in leukaemias. We emphasise much more the long term future applications of the earliest form of adult stem cells.

Narration: The future of stem cell technology is an attractive proposition but is it realistic? While stem cell technology promises anything from a cure for diabetes to a new heart, these kind of advances are still a long way off.

First scientists need to be able to make adult stem cells turn into other tissues, migrate to the right part of the body, and function there. At the moment this is a very long-term goal, so is it a worthwhile investment?

Prof Ron Penny: I think the technology will arise and as I say I believe it will arise during the life of the individual whose cord cells have been stored otherwise I wouldn?t promote it. I think it?s not an unrealistic expectation.

Dr Shane Higgins: I think they?re trading on a promise, which they anticipate they can fulfil in the future, but which scientific evidence wouldn?t entirely support at the moment.

Tim, Father of Rupert: I think it?s quite clear that this technology is moving very quickly, and for not a huge amount of money, in fact quite a small amount of money it?s a good punt.

Narration: But while the blood is locked up in the private bank, it is unavailable to save other lives right now.

Cheryl: I guess from Anna?s point of view if the cord blood that she required had been in a private bank she would have been denied the access to that and denied the chance of a cure.

Prof Marcus Vowels: It seems a pity to me to lock your cord blood away. Indeed in the future if you give your cord blood to a public bank it may well still be there for you to use in the future and if it?s not there will pretty certainly be someone else?s cord blood in the bank available for you to use.

Narration: Ultimately the choice between public or private belongs to the parents. Do you bank on the promise of amazing cures in the future, or let your baby?s cord blood save lives today.

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[fi1980]

Thanks so much Schmickers & Trillian for your very informative replies it is very much appreciated.

Cheers,
Fi

[Rommy'sMummy]

Well we did it!

DS was born 5 years ago and his 20 week scan showed that he had a life limiting heart condition. So we decided to store his cord blood stem cells in case they could be used to create another heart or tissue for him later in life.

We talked it through with our unborn sons cardiologist and cardiac surgeon and our OB. We choose a company in Vic and it cost us around $2000 - $3000 from memory - thats what our baby bonus bought us.

Our surgeon is involved in the stem cell therapy research as well as being a pediatric cardiac surgeon. I remember him saying to us at the time "ah, you believe in the future". That what it represents to us - hope for the future.

For us it has bought us some hope that IF we can use his own tissue to create a heart in the future that would mean that we dont have to wait for someone else to die in order for him to live. Worth it for us.

I am now pg again and this bub is looking healthy. We are now considering what to do with the cord blood and are thinking of donating it to our hospital for research and therapy on other kids. I know there are benefits of leaving the cord to stop pulsing BUT the benefits to other kids is larger than that.

[Bella's Lullaby]

We are donating ours to medical research. I feel that this just as important as donating the actualy blood so that hopefully in the future scientists can find cures for the diseases that the cord blood is used to treat.