Cord Blood Banking...

IADad

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Am I the only person in the history of the world to actually do this?

We waier between feeling like "the best parents in the world" to "the biggest suckers who every lived."

just wondering if we're alone or what people think on the topic.
 

Jeremy+3

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Well, did you bank for your own usage, or donate to research? If you banked, it is completely useless, if you donated it has the potential to help people.
 

Jeremy+3

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Also again, we didn't, it wasn't available when the oldest two were born, when Jake was born he was very ill so what was planned in our heads didn't really happen, otherwise we would of donated.
 

Xero

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Well, it could help him or his family in the future if they need it. Don't you know that there are tons of horrible things that can happen to you, that can actually be treated or even cured by stem cells from a family member?

Cord Blood And Disease Treatment: List Of Diseases Now Treated With Umbilical Cord Blood Stem Cells | Suite101.com

Read about it, its very interesting. You've never heard about this stuff??

Personally, I would have loved to do that, and I would really like the comfort of knowing that I have it around if I need it, but I couldn't do it because there was no way we could afford it at the time.

Props to you though IADad. I don't think you're a sucker. Better safe than sorry.
 

Jeremy+3

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Unless you can pay for someone to do research with your cord blood, then to manipulate them to offer relief from a disease you are hypothetically suffering, then its useless. Livvy received cord blood when she was 10 months old for Hurlers syndrome, it took 3 weeks to find a match, without it she would of died in her early teens it also means she wont stop developing mental by four as she would without the treatment.
Here, you register ideally before the 30th week of your pregnancy to sort out donating your cord blood, it doesn't mean you have to cut the cord very fast either.
 

Xero

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What? I'm confused as to how you are still saying its useless. I wouldn't want to give away my baby's cord blood, I would want to KEEP it because it has the potential to help things that otherwise have no help.

You realize if you had kept your daughter's cord blood then they wouldn't have to search for a match when she had those problems? It would have just been there. How does that make it useless? I think your post just proved that it IS useful. How do you call something that could save your child's life, or your child's sibling's life, or your wife's life or even YOUR life, USELESS?

How is it useless when I just proved to you all of the things that it can be used for? Are you just trying to contradict me just for the sake of contradiction or something? Call it selfish if you really feel the need to call it something, but it definitely is not useless.
 

IADad

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We banked. Donation was not an option, we had looked into that too.

I don't get your repsonse Jeremy, how can we be farther behind than an anonymous donor if we end up needing it? At least we know we have a match, in case something like your daughters situation came up.
 

Xero

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And since you must not have taken a look at my link (judging by your response) :

Umbilical Cord Blood Collection

Cord blood is valuable. Stem cells found in this blood are the building blocks of the blood and immune systems. Cord blood stem cells (and bone marrow stem cells) do not attract the controversy of stem cells collected from a developing embryo, because they can be harvested without harm to the donor. Cord blood collection can save lives and treat disease even now with over 40 diseases taking advantage of stem cells taken from umbilical cord blood. The list of treatable diseases is increasing all the time with medical researchers finding new uses all the time.
Who Can Umbilical Cord Blood Help?

A newborn’s cord blood is a source of stem cells that can be used to treat disease in the donor and the newborn and has a high likelihood of being compatible with siblings as well. Clinical studies have shown that stem cell transplants are more successful when the stem cells come from a family member rather than from a stem cell bank.
At present stem cells are used to treat disease such as genetic diseases, immune system diseases, cancers and blood disorders.
The list of treatable diseases is always increasing and all the future uses of umbilical cord blood stem cells have not yet been identified.
List Of Diseases and Disorders That Can Now Be Treated (not necessarily cured) By Using Umbilical Cord Blood Stem Cells.

Bone Marrow Disorders

<LIST>

  • <LI>
  • Amegakaryocytic thrombocytopenia</LI>
    <LI>
  • Aplastic anaemia (severe)</LI>
    <LI>
  • Diamond-Blackfan anaemia</LI>
    <LI>
  • Dyskeratosis congenita</LI>
    <LI>
  • Fanconi anaemia</LI>
    <LI>
  • Kostmann's syndrome</LI>
</LIST>Immune System Disorders

<LIST>

  • <LI>
  • Leukocyte adhesion deficiency</LI>
    <LI>
  • Omenn's syndrome</LI>
    <LI>
  • Reticular dysplasia</LI>
    <LI>
  • Severe combined immune deficiency</LI>
    <LI>
  • Thymic dysplasia</LI>
    <LI>
  • Wiskott-Aldrich syndrome</LI>
    <LI>
  • X-linked lymphoproliferative disease</LI>
</LIST>Blood Disorders

<LIST>

  • <LI>
  • Sickle-cell anaemia</LI>
    <LI>
  • Cooley's anaemia</LI>
</LIST>Cancers

<LIST>

  • <LI>
  • Acute lymphoblastic leukaemia</LI>
    <LI>
  • Acute myelogenous leukaemia</LI>
    <LI>
  • Burkitt's lymphoma</LI>
    <LI>
  • Chronic myelogenous leukaemia</LI>
    <LI>
  • Hodgkin's lymphoma</LI>
    <LI>
  • Juvenile chronic myelogenous leukaemia</LI>
    <LI>
  • Juvenile myelomonocytic leukaemia</LI>
    <LI>
  • Liposarcoma</LI>
    <LI>
  • Myelodysplastic syndrome</LI>
    <LI>
  • Neuroblastoma</LI>
    <LI>
  • Non-Hodgkin's lymphoma</LI>
</LIST>Metabolic Conditions

<LIST>

  • <LI>
  • Adrenoleukodystrophy</LI>
    <LI>
  • Batten disease</LI>
    <LI>
  • Gunther disease</LI>
    <LI>
  • Hunter syndrome</LI>
    <LI>
  • Hurler syndrome</LI>
    <LI>
  • Krabbe disease</LI>
    <LI>
  • Lesch-Nyhan disease</LI>
    <LI>
  • Maroteaux-Lamy syndrome</LI>
</LIST>Other Diseases

<LIST>

  • <LI>
  • Evans syndrome</LI>
    <LI>
  • Hemaphagocytic lymphohistiocytosis</LI>
    <LI>
  • Langerhan's cell histiocytosis</LI>
    <LI>
  • Osteopetrosis</LI>
</LIST>The collection and storage of cord blood is a simple and painless procedure. The possibility that the collected blood is useful in helping either you or a family member is increasing every day. It is anticipated that within the next five to ten years that stem cell therapies will be able to treat an enormous range of diseases including heart disease, stroke and arthritis.
 

Jeremy+3

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Xero said:
What? I'm confused as to how you are still saying its useless. I wouldn't want to give away my baby's cord blood, I would want to KEEP it because it has the potential to help things that otherwise have no help.

You realize if you had kept your daughter's cord blood then they wouldn't have to search for a match when she had those problems? It would have just been there. How does that make it useless? I think your post just proved that it IS useful. How do you call something that could save your child's life, or your child's sibling's life, or your wife's life or even YOUR life, USELESS?

How is it useless when I just proved to you all of the things that it can be used for? Are you just trying to contradict me just for the sake of contradiction or something? Call it selfish if you really feel the need to call it something, but it definitely is not useless.
If her birth mother had kept her cord blood it would be useless for her, it would just give her another dose of her defective gene, it wouldn't make her condition any worse, but it wouldn't give her any improvement either. If her birth mother had donated her cord blood it could be used for research into Hurlers syndrome.
 

Xero

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Jeremy, you know what I was saying. That's interesting that your daughter had a problem that could not have been solved by her own cord blood, as I'm sure that's fairly rare. So that donation thing only really applies to your daughter's case. This is not about your personal situation. Its about cord blood and its usefulness to begin with.
 

Jeremy+3

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Cord blood needs to contain different genes to the recipients no matter the problem the person has, even with cancers. Almost all conditions/diseases that can be treated with cord blood are inherited, whether that be dominant or recessive, cooley's anemia for example, if you receive cord blood from your sibling, parent or even cousin that cord blood contains the faulty gene that causes the cooley's which makes the cord blood completely useless for you.
It's like how a donor organ from a relative often requires a smaller amount of drugs to prevent rejection, but there are also likely to be more problems with the actual function.
 

Xero

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Jeremy+3 said:
Cord blood needs to contain different genes to the recipients no matter the problem the person has, even with cancers.
Not true. Not even close to true.

As for the rest of your post, I am more than sure that there are SOME things that your own cord blood might not be able to help. I didn't say cord blood could cure everything for everyone, for heaven's sake.
 

Jeremy+3

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Xero said:
Not true. Not even close to true.

As for the rest of your post, I am more than sure that there are SOME things that your own cord blood might not be able to help. I didn't say cord blood could cure everything for everyone, for heaven's sake.
It is according to the NHS, so thats what I'm going on.
 

Xero

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No, that's not what you're going on. You're making stuff up. You're not very convincing without backing up your "information", either. If that sentence of yours that I quoted was true, then every last cord blood storing company is lying and you are the only person in the world who claims to know the truth. Doesn't that sound a little off to you?

The NHS has never stated such a thing, and I have been researching it (at least via the internet) since we started talking, and I cannot find ANYTHING that says you can't use your own cord blood, that it has to belong to somebody else. That is completely incorrect. Matter of fact, I viewed several sites with statistics of how many donors (the child the cord blood belonged to) get transplants as compared to how many siblings get transplants and then compared to how many people got transplants from a match. They are all possible ways!! The only thing I found (which is something I confirmed to begin with) that comes up as true to your claims is that certain things (such as genetic disorders) cannot be treated by the person's own cord blood. And the cord blood could even be infected by a couple things the child is infected with:

In May 2006, The World Marrow Donor Association (WMDA) Policy Statement for the Utility of Autologous or Family Cord Blood Unit Storage[10][/URL] stated that:
<LIST type="decimal">

  1. <LI>
  2. The use of autologous[/URL] cord blood cells for the treatment of childhood leukemia is contra-indicated because pre-leukemic cells are present at birth. Autologous cord blood carries the same genetic defects as the donor and should not be used to treat genetic diseases.</LI>
    <LI>
  3. There is at present no known protocol where autologous cord blood stem cells are used in therapy.</LI>
    <LI>
  4. If autologous stem cell therapies should become reality in the future, these protocols will probably rely on easily accessible stem cells.</LI>
</LIST>As of spring 2008, there are several known instances where autologous use of cord blood is indicated:
<LIST type="decimal">

  1. <LI>
  2. Whereas the WMDA cautioned against autologous transplant for diseases with a genetic signature, there are pediatric cancers (ex: neuroblastoma) and acquired conditions (ex: aplastic anemia) which can be treated by autologous transplant. There has even been one autologous transplant for leukemia[11][/URL]</LI>
    <LI>
  3. Type 1 Diabetes, also known as Juvenile Diabetes, has been shown to improve if treated shortly after onset with an infusion of autologous cord blood.American Diabetes Association[/URL] reports that 1 in 7000 children is diagnosed each year with Type 1 diabetes, and 1 in 600 children are living with it.</LI>
    <LI>
  4. A Phase I clinical trial is underway at Duke University to investigate whether cerebral palsy and other forms of pediatric brain injury may responded to infusions of autologous cord blood.[14][/URL] estimates that the prevalence of Cerebral Palsy is about 1 in 300 among children up to age 10.</LI>
</LIST>

In case you don't know, this is what autologous means: Autotransplantation - Wikipedia, the free encyclopedia

And also, donating the cord blood like you are talking about is not for the purpose of research (if you're donating to a public cord blood bank), it is for USE by other people that are a match that need treatment for one of the many diseases that IT CAN TREAT.

You are very wrong about this, and just stating that you're sure doesn't make me believe you any more. Maybe if you had info, and facts, and links. I would be glad to read them.
 

Jeremy+3

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I didn't say you can't use your own blood, just that Livvy couldn't, so I would rather you didn't put words into my mouth. I stated that the NHS (Great Ormond street hospital and Alder Hey two of the highest ranking children's hospitals in the whole of the EU) have always told us they experience better results with non-relative blood due to the diversity of the genes in the cord blood, in all diseases treated.
In the UK donated cord blood is mainly used for research into immune diseases at Great Ormond street, at the time Livvy's treatment was experimental i.e. research.
You should also not that 1.200,000 children are treated with their own cord blood, where as the number of people receiving unrelated cord blood is equal to the number of people receiving unrelated bone marrow transplants. Due to the mass of cord blood it is not successful in adults, the cord blood needs to match the patients size, well cord blood is under 200ml, so there are two few cells available for an adult to be treated over a child.
You should note that virtually all patients who receive cord blood transplants have full chimerism (meaning two different populations of genetic material, meaning almost entirely different genes from the donor as compared to the patient).
I have two articles, one of Hurlers and one on the long term out come of the treatment, the second article a smaller number of patients survived with mixed chimerism, compared to chimerism, mixed chimerism is a donation from a family member. In bone marrow however mixed chimerism is the presence of the patients marrow and donated marrow, which is more successful in bone marrow transplantation than with cord blood.

(in the first article CB is cord blood)
Outcomes of hematopoietic stem cell transplantatio...[Bone Marrow Transplant. 2007] - PubMed Result
Outcomes of hematopoietic stem cell transplantatio...[Bone Marrow Transplant. 2007] - PubMed Result
 

Skyburning

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Jeremy+3 said:
Cord blood needs to contain different genes to the recipients no matter the problem the person has, even with cancers.
Jeremy+3 said:
I didn't say you can't use your own blood, just that Livvy couldn't, so I would rather you didn't put words into my mouth.
:confused:

This is getting nuts. To the OP I don't think you're a fool or being suckered or whatever. We didn't store Nolan's cord blood because it just wasn't feasible for us to afford it but I did consider it. At what point do you think you'll let it go though? That was something I always wondered for myself..if Nolan was healthy at 2, or 5 or 10..when would I feel okay about not storing the blood anymore?
 

Xero

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Jeremy+3 said:
I didn't say you can't use your own blood, just that Livvy couldn't, so I would rather you didn't put words into my mouth.
Actually, I did not put words in your mouth. And you did say that.


Jeremy+3 said:
Cord blood needs to contain different genes to the recipients no matter the problem the person has, even with cancers.
Its pretty clear to me that you were suggesting that a person could not use their own cord blood (which has the same genes) to treat ANYTHING (no matter the problem). So if you don't agree with what you said, then you shouldn't have said it. Sorry, but your fingers typed those words, not mine. No words were put into your mouth by my assumptions. You're the genius that came up with them.

As for the rest of your post, thank you for proving my point. :)


Edit: Skyburning: Thank you for also noticing how curiously incorrect that was. haha. We posted at the same time. :p
 

IADad

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Jeremy+3 said:
I didn't say you can't use your own blood, just that Livvy couldn't, so I would rather you didn't put words into my mouth.
Well, actually you did say it:

Jeremy+3 said:
Well, did you bank for your own usage, or donate to research? If you banked, it is completely useless, if you donated it has the potential to help people.
but I think Skyburning hit closer to the issue.
 

IADad

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Skyburning said:
:confused:

This is getting nuts. To the OP I don't think you're a fool or being suckered or whatever. We didn't store Nolan's cord blood because it just wasn't feasible for us to afford it but I did consider it. At what point do you think you'll let it go though? That was something I always wondered for myself..if Nolan was healthy at 2, or 5 or 10..when would I feel okay about not storing the blood anymore?
you know we were iffy on being able to afford it too. Truth be told we probably couldn't/can't afford it but we do. Now every year when we pay the storage fee, we wonder if it's really worthwhile, and when to stop keeping it, that is entirely the question. On the one hand I almost wish we had never banked it, but in the off chance we could use it would we feel like fools for throwing it out. I know you can't prevent/insure against everything, but when it's your kid you want to try in every way you can.

It's a struggle, and part of my motive for posting was to see what people thought of the practice and part was to bring the issue up so our "parents to be" on the board could benefit from the discussion. I think they've gotten a good does of that.

If anyone does decide to bank, let me know I'll refer them and I can save a year's storage (just kidding, I don't want to be soliciting on the forum...)

Anyway it is an interesting issue that's out there.