The MS Forum

Our first baby arrives in a matter of weeks and we have still not decided what we want to do about storing the umbilical cord's stem cells.

There are definite pro's and con's.  From my research it seems that one of the benefits of storing stem cells is in the event of an auto-immune disease such as MS.  However, if it a hereditary disease it seems that you cannot use the childs one stem cells, but will have to make use of someone elses - a sibling or parent.

I do not want to start a debate on cost vs ethics vs whatever.  What I want to know is

• how many of you have considered (and opted) this route for your children
• what does this really mean - what can they do today (or even in a few years time) if your child has MS

Any thoughts and ideas welcome. Some direction helpful.  I am trying to avoid a decision I will regret.

Yoda

 8)
Hi Yoda
A freind of ours did this two months ago. The mother has MS, and a baby daughter was born. The placenta etc had to be flown off to Germany for processing. This was very expensive - I do not know how much, and was arranged by her Neuro and her Gynae. The dilemma here is whether or not to use the stem cells to help the mother - who has MS - or to keep them in case the daughter might need them later. WHose cells are they anyway??

Now - a twist to this tale - my daughter is 5 months pregnant. A year ago whenher first son was born, not much was available out there regarding stem cells, so it was not an issue. This time around, there are pamphlets everywhere - and they are considering going for it. Dilemma again. They could be used for the new baby. They could be used for the older brother. They could even be used for the parents. Autoimune diseases seem to be more and more prevalent. How and when and for who should they be used?? :-\

Luckily this was not available when it was me giving birth - so I do not personally have to mak the decision!

Linda

Hi yoda42,

Is this not the same as the teeth fillings?  MS has such a lot of whats good and what is not issues, all of which works for some and not for others.  I would do quite a bit of research before spending the money.  A lady did stem cell treatment although the cells were from a donar that was not a family member, after spending the money the stem cell treatment has not helped, the money (quite huge) has been spent and she has had no improvement. Please be cautious and do A LOT of research and get proven results.

Ciao
Ana

Hello Linda

I found your reply very informative and thought provoking. Please teach me, if I understand you correctly you have to specify one individual only to whom the stemcells would be available? I.e. in Yoda's case, their first born's stemcells will be available only to the first born in future? Or does it have to do with compatibility?

Mandy

Hi Mandy

As I understand it, when you collect the stem cells, they are collected and stored for (I think) up to 20 years.  You do not assign them to anyone up front. It is more a case of checking compatibility and suitability at the time of deciding what happens to them. 

I just wonder if they have to defrost the whole batch to check for compatibility/suitability, and if so, what happens to the whole batch if it is not suitable for that candidate ?

It seems to semi-common practice overseas that umbilical stem cells are donated to "public property" free for anyone to use if they are able to - much like the blood service here in SA.  That means increased chances of getting a match and hopefully reduced cost - but who knows.

Yoda

As far as I know, the cells can only be used once.
They are 100% good for the baby from whom they were reaped.
They would be 50% matched for its sibling
They would be 25% matched for one of the parents.
The big decision would be to use them for a parent or sibling or keep them in case the 'baby' needed tem some time in the future >>>>>>>>>>>> ???

Hi there - me again!
Now we are getting closer.
The new baby is due in three weeks.
Do we 'buy' the placenta or not?
The cost is R15 thousand!
If it could save the life of one on my grandsons in the future - what an awesome gift!!!
If it could possibly help me one day - bargain!

But - it could just be money down the drain!

Dilemma indeed.

Has anyone heard of anything new in this regard?

We have a once off opportunity
Would hate t sit down in 10 years or so and say "if only.........."

Linda

Just an update on our situation ...........

We had decided to go for it - to "buy" the placenta and umbilical cord of our new grandson. - this could benefit me one day in the future -sounds good

There is paper work to do - deposits to pay etc etc

Then - destiny stepped in

Cameron arrived early!! We were not ready. He decided to be born due to an infection in the uterus - he was born covered in spots, his eyes were all  - he needed to get out!

The placenta, umbilical cord and everything were whisked away to the pathologists for testing to determine the cause of this infection. There they remained for around two weeks. Thus - they were of no use to anyone! We saved on the non-refundable deposit!!

Maybe the universe knows best. This was not meant to be :D

So - here I am - no better or worse off than when we first started with this deliberation

Oh yes - little Cameron spent 5 days in ICU on antibiotics, the infection cleared, blood tests showed that his mother and he were carrying the same virus - she just never reacted (it could have come from cheese ???). They are both doing well - he is so cute (his brother who was 16 months old at the time does not agree at all!). The whole thing is now shelved, as there are no future grandchildren on the horizon (thank heavens).

Linda

Hi Linda,
Firstly...
Congratualtions on your new grandson!! I'm sorry he had such a rough start and hope all goes well for him in the future.
Cheese of all things, it's actually scary to think that you're eating the right foods not sweeties etc and this happens.
Enjoy your grandsons. :)
I hope it doesn't happen soon my boys are both under aged but I can't wait for grand kids because....I'll spoil them rotten and then send them home to their fathers- then they will know what it felt like all those times when I get told but Granny says, Granny lets us, Granny bought us and (my best) at Granny we don't have to/I'll tell Granny !!  ::)

Then .... regarding the universe having a plan/destiny stepping in....remember everything that happens in our lives happens for a reason, we may not like, know or understand it at the time but it soon reveals itself.

I know this topic puts everyone in a damned if you do and damned if you don't position, and like you I'm glad the stem cell option was only really in it's research phase and not available to us when I had my last baby so I'll never have to make the decision, we could never afford to do it anyway.
BUT to all those that are thinking of going for it, I say bugger ethics and morals or what other people think, go with what you feel and want.

Have a great weekend.
W :)

Thanks Wendy
Cameron just turned one! - time flies - we are blessed
Linda