Just out of curiosity, does anybody have a particular opinion about collecting and storing sibling umbilical cords? Have any of you done this with a view to potential future stem cell therapy for your child?

I'm curious because I'm pregnant with my second child (no DMD - had PGD and also CVS to be sure) and I'm undecided whether to store the cord. It's expensive I think too.

Does anyone think it's worth it? I'd value any opinions.

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We're so right,this is why we did it.
Wow! A lot of you banked the cord! It's given me food for thought - thanks. And Melissa, congrats on your pregnancy.
Hi Lisa,

Firstly, congratulations on your pregnancy. Hope you're feeling okay and the heat hasn't bothered you too much.

We banked cordblood for our last 2 kids (boy and girl, both born without DMD) just incase a treatment becomes available in years to come. Plus, having a child with DMD and not being a carrier has made me realise that lightning DOES strike, so it's basically an insurance policy for all 4 kids. Our 3 child was born in Singapore, but our last child Patrick was born in England and we used Cells4Life www.cells4life.co.uk. We were able to pay for the collection and storage over the first 12 months, and then there is just the yearly storage fee after that. They were really great to deal with.
Thanks Sharyn. And yes, I'm ok thanks - except for the dreaded sickness! I've contacted cells4life and requested a brochure. Can you remember how much the initial collection cost? And was it straightforward in terms of actual collection? The last thing I want when I'm in labour is to have to worry about anything extra.

To all of you that have stored a cord, how did it work? Did your antenatal team have to get involved? Did you have to do anything? Sorry, I can't quite get my head round how it all works logistically. And sorry to ask so many questions.
Hi Lisa,

For me, after I delivered, the doctor who delivered Julia draw some blood from the umbilical cord. It was nothing really for me, fast and I did not pay any attention yo it. The doctor just needs to know how to use the kit, where to store the blood. Here in the US they are quite used to it, she just had to take a quick look at the instructions (less than 1 minute). Then the nurse called the number on the kit and a person from the collection company came to pick it up in an hour or so. You can keep the kit in your room after collection until they come to pick it up. I just had to fill one form, the nurse helped with that too. So basically you are not doing and do not need to worry about anything.

Some days after the collection the company calls you to let you know the number of stem cells collected from the blood and other details. I used CBR here in the US.

Ofelia

Ofelia

lisa burke said:
Thanks Sharyn. And yes, I'm ok thanks - except for the dreaded sickness! I've contacted cells4life and requested a brochure. Can you remember how much the initial collection cost? And was it straightforward in terms of actual collection? The last thing I want when I'm in labour is to have to worry about anything extra.

To all of you that have stored a cord, how did it work? Did your antenatal team have to get involved? Did you have to do anything? Sorry, I can't quite get my head round how it all works logistically. And sorry to ask so many questions.
Hi Lisa,

When we collected Saraya's cord blood in Singapore, the doctor did the actual collection. He had no problem doing it, and actually commented that he had done quite a few. However, when we had Patrick's cord blood collected in England, we had to hire a phlebotamist to come and do the collection after he was born. All the doctors refused to do it, and in fact it is the policy of many hospitals not to do the collection themselves and get a third party to collect instead. I know a friend of mine, Annette, had the same problem when collecting her daughter's cord blood. We used Phlebotamists Direct and it was no problem at all, the doctors were fine about it being done and he came in just after Patrick was born. Of course, it means they are in the room with you after you have given birth, so of course you don't really want them to see "everything" if you know what I mean. THat's the only down side.
Lisa,
Don't do it if it will be a financial hardship..clearly the prices have gone way up since I did it and really there is nothing on the horizon to use it.
Hello from Texas, I was just wondering how expensive PGD was? Renea
Renea,

Hi from Washington State. For us, we needed to pay $17,115 up front. $4500 of that was for the PGD part and the rest was to the fertility clinic. All insurance companies are different so prepayment at my clinic was required. About $12,715 was paid to the clinic and I paid the $4500 to the PGD lab directly. What my clinic did was put the $12000 + into a "clinic bank account" and as bills needed to be paid, the clinic would submit it to my insurance and whatever my insurance didn't cover they took out of my "bank". After all bills were paid I received $4300 back from my "clinic bank" and I received about $1200 from my insurance after I filed a claim for the PGD payments. It hasn't been easy (the money part). We had our procedure done in June of 2010 and I'm still trying to get the insurance to reimburse us for more. Also the fertility drugs were about $5000 additional and my insurance had a $2000 maximum. Thankfully it worked for us and I'm about 24 weeks pregnant. Good luck, if you have more questions don't hesitate to send me a message.

Renea Hawkins said:
Hello from Texas, I was just wondering how expensive PGD was? Renea
Congratulaions! Sounds like determination paid off, not to mention money well spent!

Wyatt's Mommy, Melissa said:
Renea,

Hi from Washington State. For us, we needed to pay $17,115 up front. $4500 of that was for the PGD part and the rest was to the fertility clinic. All insurance companies are different so prepayment at my clinic was required. About $12,715 was paid to the clinic and I paid the $4500 to the PGD lab directly. What my clinic did was put the $12000 + into a "clinic bank account" and as bills needed to be paid, the clinic would submit it to my insurance and whatever my insurance didn't cover they took out of my "bank". After all bills were paid I received $4300 back from my "clinic bank" and I received about $1200 from my insurance after I filed a claim for the PGD payments. It hasn't been easy (the money part). We had our procedure done in June of 2010 and I'm still trying to get the insurance to reimburse us for more. Also the fertility drugs were about $5000 additional and my insurance had a $2000 maximum. Thankfully it worked for us and I'm about 24 weeks pregnant. Good luck, if you have more questions don't hesitate to send me a message.

Renea Hawkins said:
Hello from Texas, I was just wondering how expensive PGD was? Renea
Thank you!

Wyatt's Mommy, Melissa said:
Renea,

Hi from Washington State. For us, we needed to pay $17,115 up front. $4500 of that was for the PGD part and the rest was to the fertility clinic. All insurance companies are different so prepayment at my clinic was required. About $12,715 was paid to the clinic and I paid the $4500 to the PGD lab directly. What my clinic did was put the $12000 + into a "clinic bank account" and as bills needed to be paid, the clinic would submit it to my insurance and whatever my insurance didn't cover they took out of my "bank". After all bills were paid I received $4300 back from my "clinic bank" and I received about $1200 from my insurance after I filed a claim for the PGD payments. It hasn't been easy (the money part). We had our procedure done in June of 2010 and I'm still trying to get the insurance to reimburse us for more. Also the fertility drugs were about $5000 additional and my insurance had a $2000 maximum. Thankfully it worked for us and I'm about 24 weeks pregnant. Good luck, if you have more questions don't hesitate to send me a message.

Renea Hawkins said:
Hello from Texas, I was just wondering how expensive PGD was? Renea
I'm not sure why my response printed so many times, but it was definately worth it. The medical part of it wasn't nearly as bad as I thought it would be! Have a great afternoon


Renea Hawkins said:
Congratulaions! Sounds like determination paid off, not to mention money well spent!

Wyatt's Mommy, Melissa said:
Renea,

Hi from Washington State. For us, we needed to pay $17,115 up front. $4500 of that was for the PGD part and the rest was to the fertility clinic. All insurance companies are different so prepayment at my clinic was required. About $12,715 was paid to the clinic and I paid the $4500 to the PGD lab directly. What my clinic did was put the $12000 + into a "clinic bank account" and as bills needed to be paid, the clinic would submit it to my insurance and whatever my insurance didn't cover they took out of my "bank". After all bills were paid I received $4300 back from my "clinic bank" and I received about $1200 from my insurance after I filed a claim for the PGD payments. It hasn't been easy (the money part). We had our procedure done in June of 2010 and I'm still trying to get the insurance to reimburse us for more. Also the fertility drugs were about $5000 additional and my insurance had a $2000 maximum. Thankfully it worked for us and I'm about 24 weeks pregnant. Good luck, if you have more questions don't hesitate to send me a message.

Renea Hawkins said:
Hello from Texas, I was just wondering how expensive PGD was? Renea

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