Stem cell storage - your baby's ultimate health insurance?

Stem cell research has come a long way in a relatively short amount of time. The appeal of stem cell therapy as one of the most successful and least invasive ways to treat certain forms of cancer has made it very popular among patients with these diseases. New applications for stem cell research are being developed as doctors continue to search for ways to use it to cure more diseases.

 

As an addition, Donating your baby's Cord Blood was indeed a very great way to ensure your baby's health in the future. :thumbsup Other researcher said that it can also help to restore vision which is not only for your baby, I believe it can also help others.

 

Cord Blood Banking

Hi All,

We are expecting our first baby in Oct and of late have been debating cord blood banking. We are thinking of a public bank but unsure if the procedure is risk free and of any real benefit. Would love to hear from other parents who have donated cord blood or are thinking of donating.

Deepa

 

Re: Cord Blood Banking

Dear Deepa,

First, best wishes on enjoying the last few days of your pregnancy, and lots more best wishes for a safe delivery and to enjoying the first days (and nights) with your new born!

We had a baby on Christmas Day 2009. We had decided that his birth should be a gift not just to us, but to some unknown stranger somewhere, sometime. So, after much deliberate research and discussion, we donated his cord blood to a public bank. Even as we decided, we knew that he would be an only child and would never have a sibling who could help out in a dire situation. Yet, we are very happy about that decision.

In making this very crucial decision, we wore many hats - as concerned parents, as discerning individuals. Besides reading extensively on the topic,we spoke mainly to two people.My cousin who is a cardiologist and a new grandmom. A family friend who is engaged in guiding stem cell research therapy. My cousin and her daughter chose not to bank cord blood, again after much research.

The motivation to save the cord blood in a private bank came from my BiL who is an oncologist in California, and has saved the samples from both his children. So, initially we were very tempted to follow his educated decision.

However, after much reading, we found that there is the other side, the non necessity to bank, or to donate to a public bank. And this side is just as justified.

In our case, the following points were important. Neither me nor my husband had any inherited diseases that would pass on to our child. And even if we had such diseases, banking would be even more irrelevant, since the banked blood would also carry the mutation, and would not have helped our child. So, point one is -banking cord blood is futile if there are inherited, genetically transmitted diseases. The resource cannot be used by the child or by others.

Suppose, the child meets with an accident (God forbid) and has injuries, especially spinal injuries, the banked cord blood would be useful. This is just one of the many instances where it would be useful.However, in that side we found certain other restrictions. Stem cell therapy is that last resort. And they do opine that such research is still in the very primitive stage. Maybe we could argue/foresee that by the time, the child needs therapy, research would have advanced to meet ground requrements. But since this is a politically volatile issue, the decision is very wide and open.

Another argument in favour of privte banking would be that cell mutation in leukamia and certain other forms of cancer could occur to anyone, regardless of the genetic propensity. We chose to ignore that aspect. Anything can hapen to anyone at any time. There are no guarantees in life.

So, what is the positive motivation to donate to a public bank? We gave it to a non profit organisation as most public banks are. Well, if there is a patient with a situation where stem cell therapy is the only way out, and if the donated stem cell is a perfect match- then a life is saved. And if the public bank is donating the stem cell for free, or for nominal operational charges (which they do, if the patient is economically challenged), then again a valuable life is saved, a family is saved.I must admit that these emotional considerations weighed our decision, especially my side, enormously.

I also spoke to many friends both in india and the US. Regular, normal ladies and moms, who had delivered, and had the financial and social resources to privately bank cord blood. Surprisingly, I found none among them who had banked.

One remark which I remember strikingly is a good friend saying,' you cannot insure against every risk.You have to take life as it comes and hold faith'.

So, faith we held on to and happily donated the cord blood to a public bank. We got the second opportunity to reconsider, when our baby's sample was clinically examined and found free of all contaminants (HIV, Hep, Syphyllis,Malaria etc). The stem cells are extracted only after that. But we were only more resolute in our decision at that time.

I like to think that none of us really exist alone in this world. And our births at particular times and situations, are predestined, inter-twined. We were blessed with a child 14 years after marriage. Maybe, if I had delivered 14 years before, the issue of cord blood banking would not have come up at all. We would not even have known about it. But, when I think that my son was born when he was, that we read intensively and extensively and realised the need for public banking -all this probbaly means that there will be someone, someday, maybe in Australia, maybe in Madras, maybe in Nigeria who will need my son's stem cells.And will hopefully get it for free. And many smiles will go round.

An emotional decision, but made after much research and deliberation. We are happy we did it.

 

Dear Vidya,

Thanks a lot for such a detailed response.

We too have decided on public banking as the reasons to bank privately weren't convincing enough.

True, it is a crucial decision and I feel that if it does help anyone in need then why not. The only concerns I have are the following-

1) Some web articles talk about how it is not entirely a risk free venture. That is if the cord is clamped too soon if It would lead to anemia in the baby. I couldn't find more information on this so looking forward to other parents for suggestions,

2) then is the ethical debate surrounding Cord cell banking. The larger concern that stem cell research and cloning technology go hand in hand opening up issues and concerns if the donated cord cell would ever be used for cloning purposes etc.

Anyway, I intend to read up a bit more and also looking forward to tips from other parents on this.
thanks!
Deepa

 

Re: Cord Blood Banking

Dear Vidya,

It is a pleasure to be addressing you once again, although from the other side of the fence, so to say!

This post has been nominated to the FP of the month by Rajalakshmigopal and that's how I was made aware of it. Congratulations seems such a small word to say, but you deserve it manifold.

I read your long reply explaining the pros and cons of saving the cord blood at the birth of the baby. Knowing you and how thoughtful you are, it came as no surprise that you would have done a thorough research about this matter. Everything you have said here was really thought provoking and very valid. Everyone does what they think is best and when faced with questions like should or shouldn't. It is really nice to have someone experienced who can give invaluable advice. This post is going to be a reference point for many young parents.

Also an eye opener of sorts. Though my daughter saved the cord blood for both her children, I never paid much attention to it as it did not directly concern me. With this, I am more aware of its various implications.

All of us try to do what is best for our child and ourselves. Giving the cord blood to the bank with the thought of saving another life is truly generous. And above all, your quote---- ' you cannot insure against every risk.You have to take life as it comes and hold faith'---- is simply enormous. Yes, that's the way to live.
However much we plan and what ever we may undertake, the final strings are in the hands of the Almighty.

I am sure your little one is a heart throb and must be keeping mommy dear totally mesmerized. Only the very best to him!

L, Kamla

 

Dear Vidya

What a lovely and patient answer to the query! Hats off to your decision which concerns someone somewhere in the world. Some of the words in your post have highly broadened my way of thinking...May God Bless you and your wonderful child who has already started making a difference in people's life just with his birth...

Best of Luck for everything in Life!!

 

Dear Jyothi, Kamla and Deepa,

Deepa sweetheart- brace yourself for another detailed response here!!! My husband says that when I start talking ,I cannot stop. I guess, it applies when I start typing also.

Jyothi- Thank you for such warm and kind words. We wish,pray and hope that some day, the donated stem cells will be available for free to a truly deserving person. Every day, we see in The Hindu, appeals from sick children who need stem cell therapy. The cost of just 1ml of stem cells is so exhorbitant, the whole therapy is expensive beyond belief. In that context, if our child's stem cell resource serves some use, his life will be more blessed.Thanks again for the generous words.

Kamla- I did not know that my post was nominated. I must check that out and bask for a few moments--. When I brazenly wrote that I did research, I should have mentioned that much of it was done by Rajalakshmigopal and my husband. Raji is very much the 'pro saving' group and she really pushed me hard to save. In fact, she took time off to consult Dr Geetha Haripriya on this, just for me. I wish she would write her opinion here, she has forceful reasons for saving.

Our decison- we made it in full faith, against the wishes of both sets of grand parents and many friends. As a good friend (no prizes for guessing who) said, 'you are not making the right decision,Vidya. I just hope you dont regret it ever.' Only time will tell if it is the correct decision, though we believe it was the only and rightest decision we could have made at that point.

Thanks for addressing me. I thought we were on the same side of the fence----.

And thanks for the best wishes to Prahlad. He is indeed my heart throb, with his cries of,'Imma, Tia' (for Vidya), mammam (for food), huge huggies and kissies---

Deepa- To address some of the points in your response. As you say, private banks are not convincing, nor are they scruplous. We met atleast three salesmen.One switched on his ppt presentation and went out. The other was only intent on bad mouthing the first company, telling us that they gave discounts to parents and cut backs to the hospital. The third salesperson, a lady, gushed every other moment,' I am also a mother,Vidya. I can understand your concerns'.

They were such a motley crowd.

When my husband asked one of the salesmen for his company's policy of ethics, he had absolutely no idea what it meant. When we explained it to him, he was very indignant that we could suspect his company of misusing the resource. He gave us a wonderful retort for that. 'What is so special about your baby, that we should use its (not his or her) stem cells for research or cloning? If we want, we will just bribe the ward boy in a delivery room and get any number of resources for free.'

Then, we realised why he did not know what policy of ethics meant.

Pvt companies are sharks, and sad to say public banks are piranha. They also have their axe to grind.In the first case, the motive is profit, in the second, it is funding, conferences, awards ,reputation etc.

I was also worried about the incorrect harvesting of the cord blood.But I guess, if an experienced obs is doing it, the baby will be just fine.

The issue of cloning is also something that bothered us. In the end, we felt, that the only way out of that debate, was to discard the cord blood, like most parents. If you save, be it in a pivate bank or a public bank, after all the legal documentation and declaration, if they wish to misuse it, they will and they can.

However, a public bank cannot misuse it so easily. There will be social audits. As donor parents, even we can demand for a status report of our donation. And the chances that the resource might be put to optimal use are higher in public banking. They usually give it to the first total match that comes up. And if the patient is economically challenged, it is given free. If not a fee is charged depending on the financial condition of the patient. And hopefully, that fee is recycled for better use in the public bank.

There is one option where you can save and serve. In a private bank, when you pay about 4000 Euros or Rs 75,000 to process and save, they tell you that it is their actual operational cost.However, it costs them just half that amount to cull and save (which is why they can afford the cut backs to the doctors etc). In public banks which also offers a private save option, you still pay the same amount.But, half the amount is used to process a public donation. So, you would have your child's resource saved privately, and at the same time, do a good deed in sponsoring the processing of a donation.

Do check out the ALL angle before you decide. Also, in Kerala, we have this age old system of saving the dried out cord at home. It is called 'naaye kaashu'. Recent research says that stem cells can be culled from that too.

Best of luck in making the best decision.

 

Dear Vidya,

To say that I am overwhelmed by the information about Stem cell saving and banking is an understatement. The subject and the choices to make are relatively new and also daunting. Your post surely gives a wealth of information especially for all the young parents who are facing this question and wondering what decision to make.

When my daughter and s-i-l went for it, they did so in consultation with their doctors. We did not contribute to their decison in any way and besides, certain ocurances (without my going into detail here) also underlined their decision. I did not give much thought to this matter, till now, thanks to you. Goes to show that one learns something everyday and being in FP helps!

Apropos FP, yes, that 's the fence! You are now on the other side of the fence and hence can be nominated, which was not possible when you were my partner! Thought you'd get that?! Apart from that, as far as I am concerned, no fences between us!

Prahlad is a very beautiful name, has its own aura! God bless little Prahlad with only the very best and his 'mazhalai mozhi' sounds so cute, the way his mamma describes it here!

I am so happy for you.

L, Kamla

 

As part of my daily routine, I started reading about this stem cells. As it stands now, my DH and I are thinking about saving our babies cord blood, should there be a day when we need it.

In case anyone is interested, it is costing about $1500-$1800 which covers the initial fees, processing etc. From there on, depending on the blood bank, the maintenance fee is about $75-$100 an year.

Ladies who are expecting a baby soon: have you all looked into this?