Re: Saving the cord blood for future use

[Guest guest]

Hi Torsten,

A close friend is also planning to do that with her expected baby girl.

She has two kids already with CF but this one is not even a carrier!

I do know that it has to be sent FexEx to NY for overnight delivery (I

guess to preserve it?) and the cost is somewhere around $2,000. A

lot...but maybe not, if it helped cure their siblings CF.

I don't know how it works in Europe but I'd be happy to get the name of

the company in the States if you want.

Lori

Saving the cord blood for future use

Hi,

we are planning to save the cord blood of our expected baby boy, so

that it might help him or Fiona in the past. Who has done that

already, what do we have to pay attention to, what are the costs, is

there anything else one would like to recommend?

Thanks in advance for your input.

Peace

Torsten, dad of Fiona 6wcf and baby boy due in May

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

------------------------------------

[Guest guest]

Hey all I am not sure if I told everyone about the website called

www.mycysticfibrosis.com

but its really neat and a cool way to keep track of height weight and lung

functions and other things and chart them.

Saving the cord blood for future use

Hi,

we are planning to save the cord blood of our expected baby boy, so

that it might help him or Fiona in the past. Who has done that

already, what do we have to pay attention to, what are the costs, is

there anything else one would like to recommend?

Thanks in advance for your input.

Peace

Torsten, dad of Fiona 6wcf and baby boy due in May

[Guest guest]

Torsten,

I would do the same if we were having any more babies. And of course if

they said they found something from cord blood to treat Cf, we'd be

pregnant tomorrow LoL.

(Australia)

Saving the cord blood for future use

Hi,

we are planning to save the cord blood of our expected baby boy, so

that it might help him or Fiona in the past. Who has done that

already, what do we have to pay attention to, what are the costs, is

there anything else one would like to recommend?

Thanks in advance for your input.

Peace

Torsten, dad of Fiona 6wcf and baby boy due in May

[Guest guest]

Hi Torsten,

We banked my daughters cord blood. We found out she was going to have CF

when I was 5mo. pregnant. Our Dr. thought it would be a good idea as well.

It is a really easy process although some can be a little expensive. We

chose to go with CBR (cord blood registry). I believe we paid about $3,000

for the collection and to have it banked for 18 years. There are some forms

your OB or Midwife need to fill out and your wife will need to send in some

lab work results then they send you a kit that you take with you to the

birth. After the cord blood is collected and repackaged you need to

overnight it to the company. I believe you have 48hrs to get the sample to

them from the time it is collected. It was all very easy and we feel like

it was money well invested. If you are interested in checking out this

company their website is www.cordblood.com

Hope this helps,

Mom to Jack 2 wocf and Ellie 4mo. wcf

Saving the cord blood for future use

> Hi,

>

> we are planning to save the cord blood of our expected baby boy, so

> that it might help him or Fiona in the past. Who has done that

> already, what do we have to pay attention to, what are the costs, is

> there anything else one would like to recommend?

>

> Thanks in advance for your input.

>

> Peace

> Torsten, dad of Fiona 6wcf and baby boy due in May

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

HI

We saved our second sons cord blood. He is a carrier of the CF gene. We did

it through Cord Blood Registry in CA. It was approx. $2000 and then it is

about $100 a year. They sent us a kit to collect the cord blood then it was

mailed to CA by express mail or Fed ex. If you have questions or want more

info email me directly at Joshscure@...

Mom to Josh 9 wcf and 4 nocf but wants to do therapy for

his brother.

[Guest guest]

Torsten,

I had the same thought when Amelia's (5yo with cf) baby sister was born in

2000. I eventually decided not to do it, though I'm still not sure I made

the right decision. At the time, an NIH consensus report had just come out

listing the conditions most likely to benefit from stem cells in the cord

blood, both in the near future and further away. CF wasn't even in the list

of diseases they were speculating about possible therapies that the stem

cells could help with. Also, in the US, it's quite expensive to put the

blood in the bank and apparently the banks may or may not use proper storage

techniques so that the cells won't be viable if and when you do need to use

them. Also, the new baby was to be born via Caesarian section and my OB was

not enthusiastic about taking the time away from closing my incision to

harvest the cord blood, which apparently has to be done relatively quickly

after the birth for the cells to remain viable.

If I find a link for the NIH report, I'll post it.

Good luck with the new baby! I hope Fiona has as much fun being the big

sister as Amelia does.

Terry

Saving the cord blood for future use

Hi,

we are planning to save the cord blood of our expected baby boy, so

that it might help him or Fiona in the past. Who has done that

already, what do we have to pay attention to, what are the costs, is

there anything else one would like to recommend?

Thanks in advance for your input.

Peace

Torsten, dad of Fiona 6wcf and baby boy due in May

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

[Guest guest]

Congrats on your expected baby. We found out our daughter had CF when I

was pregnant with her. She is now 3 months old and what a challenging 3

months it has been! We researched saving her cord blood and were told

it wasn't necessary. I'd be interested to hear what you find out as we

hope to have another baby in the next year or so. Do you know yet if

your expected baby has CF?

Saving the cord blood for future use

Hi,

we are planning to save the cord blood of our expected baby boy, so

that it might help him or Fiona in the past. Who has done that

already, what do we have to pay attention to, what are the costs, is

there anything else one would like to recommend?

Thanks in advance for your input.

Peace

Torsten, dad of Fiona 6wcf and baby boy due in May

[Guest guest]

It is BECAUSE we banked our sons stem cell cord blood that we found out he

had CF in the first place!! When Cole was 10 days old we were notified that

he tested positive from a simple test they perform routinely in Arizona to

determine the presence of CF. We live in California and they do not

currently perform any tests for the presence of CF here.

We still have his cord blood banked at Cord Blood Registery in Tucson, AZ.

There are only two places to date in the US that do such a thing and we chose

Az because they were the pioneers and seemed far far far more professional

than the other. They have an initial set up cost and then annual fees of, of

think, about $100.00.

Telephone number is: 1-

<A HREF= " www.cordblood.com " >www.cordblood.com</A>

Good luck and hope this helps you!

By the way, our little one, Cole who is 14 months old now, just underwent

surgery for G-Tube placement. So far it's been a nightmare but we're hoping

it will improve with time.....any contacts for me?? we're exhausted and

discouraged...

Maggie Lefebvre

[Guest guest]

Hi Torsten,

Just a quick word, to say Thanks a million for passing on all the

necessary emails from the CF parents group.

We now have a computer at home and I'm hoping to get it up and

running soon and a new email account set up.

The very best of luck in May with your new arrival and regards to

Fiona.

Ella.

For more information on the C & C Group visit http://www.candcgroupplc.com

**********************************************************************

[Guest guest]

Hi, I'm new and was looking through the posts. We saved our son's

cord blood, but we used Viacord. I preferred their storage method

and the fact that included in their price was a medical courier

(instead of shipping through Fed-Ex) and one phone call to them

during delivery took care of everything. They also had a great story

on how they were able to save all of the cord blood that was being

shipped to them on 9/11. For more info go to www.viacord.com

-Janel

> Hi,

>

> we are planning to save the cord blood of our expected baby boy, so

> that it might help him or Fiona in the past. Who has done that

> already, what do we have to pay attention to, what are the costs,

is

> there anything else one would like to recommend?

>

> Thanks in advance for your input.

>

> Peace

> Torsten, dad of Fiona 6wcf and baby boy due in May

[Guest guest]

Congratulations to the Krafft family on their soon to be new addition. It's

been awhile since I've been on-line and as Torsten mentioned happy to see the

support numbers increasing.

Love from Canada