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Pregnant after IF
snoangel79
member
Twins born at 34w2d, Allison, 3lb,4oz-Ethan, 4lb7oz, both 16 1/2 inches. Out of Difficulties Grow Miracles
XP:Cord Blood- private vs donate
snoangel79
member
Hi fellow moms,
I thought I'd repost this on this board also as I posted on my BMB too. If anyone has questions I'd be glad to answer but since I typed this out and it took so long <: I thought some mom's here also may find it helpful hopefully if they were debating on what to do <:
I am finally sitting down to write out the pros/cons of private vs donate vs trash... I said I was going to do this a while ago and haven't gotten around to it because well bad m/s and just being exhausted. What makes me sort of an expert you ask <: I am a cord blood collection specialist at Brigham and Women's in Boston (a cord blood donation program with Dana Farber (top cancer hospital) and also Duke's Carolina Cord Blood Bank). Previous to this I worked for the National Marrow Donor Program at Dana Farber (marrow.org) or the adult unrelated bone marrow registry telling people they were matches for patients and getting further testing for them. Before that I was also on the other side of the coin as a cancer survivor (non-hodgkin's lymphoma, 8 years ago), which is one of the main diseases sibling, unrelated, and cord blood transplants can cure.So in my current job I actually consent the mom's that aren't privately donating and am in labor and delivery. After the mom delivers the placenta I do the collection on it and hopefully get enough to bank down for transplant for a child or adult with leukemia, lymphoma, or another blood disorder such as sickle cell anemia.Now with donation it is a free program but unfortunately not widespread because of funding issues. We don't touch your baby and your delivery experience does not change in any way. I think if you don't have it available at your hospital you can contact marrow.org and they will send you a kit and hopefully your doctor will do what they are supposed to!The chance of you using your baby's cord blood are so so small if you do private banking and what people don't understand is if a child or adult needs a transplant they will look to the sibling first for a match (25% chance), then to the unrelated adult donor database (National Marrow Donor Program, DKMS etc.), last to cord blood. A sibling can donate to another sibling (bone marrow) as young as 6 months old!! They would more likely take from that 6 month donor than the cord blood because they will get more product which in turn will be better for the patient who will hopefully engraft quicker and get out of the "danger zone" of serious infections. If you are private banking I would ask "How much did you actually bank from our cord blood unit?" We can't cryo-preserve under 1 billion cells as it wouldn't be enough to "save a life". We also don't take cords from multiples or gestation age under 35 weeks as we would not get enough but private banks do, which is very concerning to me.Also, your privately banked unit would probably not help out you, or your husband, or great granddad as it needs to be a 4 out of 6 DNA match to not be rejected by your body (half the DNA comes from mom, half from dad. The chance of you having the same DNA as your husband is extremely tiny there is more of a good chance of match if you are the same ethnic make-up). This would only help a potential sibling if they are indeed a match. It wouldn't most likely be used for the child it came from either if the child ended up with leukemia as it could be some genetic defect from the beginning. You are basically banking for "future cures" for things they haven't figured out yet to use cord blood for and you also need to think if it would even still be good?? The viability of the unit is tested but if it is frozen for 20 years who knows??What makes me sad is there are a few good stories of it working and these companies prey on parents with scare tactics. I am not saying don't do it I just want all of you to make informed decisions about it. What people don't know is also if there is a sibling with a potential issue (blood disease) if you ask you may be able to have a directed donation for that sibling. We actually collect cord blood as a directed donation for the sibling and you wouldn't have to pay that banking fee. I will also tell you that most doctors and nurses don't privately bank their baby's cords they donate so that definitely speaks for itself. Also some doctors get kick-backs for pushing private banking just an FYI.Anyways, this is basically a huge amount of info and if you read it thank you! If I missed anything or if you have any questions I'd be glad to answer them!Best,
Laura
Twins born at 34w2d, Allison, 3lb,4oz-Ethan, 4lb7oz, both 16 1/2 inches. Out of Difficulties Grow Miracles
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Re: XP:Cord Blood- private vs donate
April 2011: Metformin 1500mg + Clomid 100mg + Ovidrel + Prometrium = BFP!
Beta #1 at 14DPO: 197 Beta #2 at 18DPO: 1296
At 40w6d, our Team Green surprise came by unplanned C-section and changed our lives forever!
thank you so much for posting this! my H and i were just starting to think about this - FIL has a form of leukemia (can't think of the type right now, but he was diagnosed years ago and is living a very normal life/never has had chemo) and my mom has post-polio syndrome, and we were considering private banking in the event that our babies' cord blood could help them one day.
question for you - you mentioned you don't take donated cord blood from multiples. is that always the case? i have 2 placentas/sacs.
After 2+ years and multiple treatment cycles,
including an IVF vacation in Costa Rica/Panama,
IVF #2 brought us our miracle baby!
Surprise! Baby Boy is on the way!
Thanks for posting this. We had already decided to donate publicly, which we've confirmed we can do here with twins. I personally find it unconscionable how private banking companies are peddled in front of uninformed but well meaning parents who can seldom afford the ridiculous amount they charge, in return for a false sense of security.
5 REs + 3 surgical hysteroscopies for septum/lap + 3 failed IUIs
IVF w/ICSI/AH & acu = BFP!, unexplained spontaneous m/c @ 8w2d (our little girl),
FET w/acu = BFP!, B/G twins!, lost MP @19w, dx w/funneling cervix @20w,
twins nearly lost to IC @21w, saved by rescue cerclage, 17P & 16w of bedrest
Our twins born @36w4d via CS when A came foot first
Thankful for every day
We don't at our facility not sure about others but the ones affiliated with Duke and the National Marrow Donor Program do not. The reason that we give is below. Also most twins are born earlier so there would be a good chance there wouldn't be enough even if there were two separate donations per say as with a fraternal. There is a chance that those two twins got different DNA lines from their parents also and you can't combine that.
NMDP Network public banks cannot accept donations if you are having twins. Tissue types are used to match a cord blood unit to a patient, and there could be a possibility of mixing or confusing the tissue types of the two umbilical cords.Snoangel - thanks for the clarificatin about the impacts of donation when you delay clamping/cutting. We spoke with our doctor today about delaying the cord clamping until after it stops pulsating...the research I saw online indicated that delaying the cord clamping is not compatible with private cord blood collection.
You've helped us make our decision!
Just wanted to thank you as well! This is great information that most people don't have/understand. I will be delivering at the Brigham in a couple of weeks and we will be donating, so I might see you there!