Anyone 'Donated' Cord Blood Before?

Updated on September 17, 2008
A.L. asks from Sterling, VA
8 answers

Just wondered if anyone has donated cord blood before? Don't really see why I wouldn't do it but I guess it is just new territory so still feeling it out. Anyone with personal experience - especially if you delivered and donated here in the NOVA area?

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So What Happened?

Well you won't believe how HARD it is to just donate the cord blood. I would have to deliver at Fairfax Hospital to donate the cord blood. Fair Oaks doesn't have a program/collection site for that. I have contacted a ton of places and they do not have partnerships with other hospitals to pick up donated cord blood - I guess because there is so much paperwork involved they don't have the man power to do it. And since VA doesn't have a very big program they can't do it unless the hospital you deliver at has the program. And trust me I have been on the phone with all kinds of people and facilities today - can't believe it! Thank you though for all of your responses. Don't have the option to store it for personal use but thought donating would be a good idea - who would have thought?

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S.M.

answers from Washington DC on

Try to contact some of the companies that store blood. I stored with Cryo-Cell (delivered at Reston), and I am almost positive that they will take donations or assist in collecting the blood and getting it to the correct organization.

Also try the American Cancer Society and see if they know.

I think you want to do a great and kind thing - hope it works out.

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J.P.

answers from Washington DC on

I banked my daughter's cord blood through Viacord when she was born 17 months ago at Loudoun Hospital. My doctor was agreeable to my banking of my daughter's cord blood and in fact when he extracted the cord blood he said that he was able to get quite a bit. Viacord was helpful during the process and sent the cord blood kit to my home several months before the baby was due. All we had to do was call Viacord the day my daughter was born and they sent a messanger to the hospital the next day to pick up the blood. We didn't have to do anything else. They send us periodic reports letting us know our cord blood is safe and they also send different articles and stories of families who have had success in using their cord blood to treat certain illnesses. The initial cost is a little expensive (about $1100 or $1200) but once the blood is banked you only pay an annual fee of $125 for the blood to be stored. Hope this helps.

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A.C.

answers from Washington DC on

Actually we ended up saving our baby's cord blood due to the fact that heart problems run in my husbands family and they are doing amazing things with these cells and this issue. I delivered at NOVA Fairfax 14 months ago and we were going to just donate the cord blood when my husband's heart doctor who knew that I was pregnant suggested that I save it. I will say that I'm so glad that I did and it's very inexpensive and if god forbid and my son ever needed it or my husband it can used. Actually we had enough cells to be used more than once. I highly recommend you do save it - or donate it because they are really doing some amazing life saving things with it and I know some people may feel that it's morally wrong but after serious consideration I decided that it was for me. If you deliver at Fairfax and you were to need it ever, you can get it back for your child's use however you do run the risk of it already being used. Best of luck and hope the delivery is smooth and wonderful.

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C.F.

answers from Washington DC on

I did. Well, I didn't donate it - meaning I'm having it stored for my family's use. I delivered my son at Reston, and Cord Blood Resgistry is the company I used. That way, those cells will be there for my son should he ever need a bone marrow donor, or certain cancers. Also with today's research, they are finding new uses for these cells everyday. I did it for my daughters in california and used the same company. I highly recommend it. It was easy!

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J.K.

answers from Washington DC on

We did it with both daughters. My 35 year old cousin was diagnosed with leukemia the same month we got pregnant. We decided to get the cord blood and give it to her. She did not make it long enough to meet my daughter and left behind a 2 year old little boy.
In her honor and because I am so worried something could happen one day, we banked them both through CBR since they had the highest success rate of cord blood being used successfully after harvesting.
They send you a kit but you just need to find out from your OB if she/he prefers a syringe collection or a bag collection. They will send you the box that you bring to the hospital and then right after the delivery, your significant other will call the place (CBR, in our case) and a messenger PERSONALLY comes to pick it up and RIDE WITH IT on the plane to the storage place!) They call within a few days and tells you how many millions of cells were harvested, etc. The storage fee is only like 100$ or so a year and if you can refer someone who successfully completes a harvest- you get your year free. We have done it twice already and saved 2 years of storage fees!

We went through a NOVA hospital. :)

If you DONT want to save it yourself i would totally recommend donating it. It is such a selfless and completely generous act to do it and so much good can come of it, when normally it gets destroyed as bio-trash.
The studies they could do with it could eventually help us find a cure or a way to live with diseases that kill.

Look at all the ways your stem cells could help our future:

Diseases Treated with Stem Cells

Although not all diseases treated with stem cells have been treated specifically with cord blood stem cells, doctors have been using cord blood in lifesaving treatments since 1988. And recently, scientists have discovered some amazing new possibilities for treating diseases and injuries in the future.
Current Stem Cell Applications

* Bone Marrow Failure Disorders
o Amegakaryocytosis
o Aplastic Anemia (Severe)
o Blackfan-Diamond Anemia
o Congenital Cytopenia*
o Congenital Dyserythropoietic Anemia
o Dyskeratosis Congenita
o Fanconi Anemia
o Paroxysmal Nocturnal Hemoglobinuria (PNH)
o Pure Red Cell Aplasia

* Hemoblobinopathies
o Beta Thalassemia Major
o Sickle Cell Disease

* Histiocytic Disorders
o Familial Erythrophagocytic Lymphohistiocytosis
o Hemophagocytosis
o Langerhans' Cell Histiocytosis (Histiocytosis X)

* Inherited Immune System Disorders
o Chronic Granulomatous Disease
o Congenital Neutropenia
o Leukocyte Adhesion Deficiency
o Severe Combined Immunodeficiencies (SCID) including:
+ Adenosine Deaminase Deficiency*
+ Bare Lymphocyte Syndrome
+ Chediak-Higashi Syndrome*
+ Kostmann Syndrome
+ Omenn Syndrome
+ Purine Nucleoside Phosphorylase Deficiency
+ Reticular Dysgenesis
o Wiskott-Aldrich Syndrome
o X-Linked Lymphoproliferative Disorder

* Inherited Metabolic Disorders
o Adrenoleukodystrophy
o Fucosidosis
o Gaucher Disease*
o Hunter Syndrome (MPS-II)
o Hurler Syndrome (MPS-IH)
o Krabbe Disease
o Lesch-Nyhan Syndrome
o Mannosidosis*
o Maroteaux-Lamy Syndrome (MPS-VI)
o Metachromatic Leukodystrophy
o Mucolipidosis II (I-cell Disease)*
o Neuronal Ceroid Lipofuscinosis (Batten Disease)*
o Niemann-Pick Disease*
o Sandhoff Disease*
o Sanfilippo Syndrome (MPS-III)
o Scheie Syndrome (MPS-IS)
o Sly Syndrome
o Tay Sachs*
o Wolman Disease

* Leukemias and Lymphomas
o Acute Biphenotypic Leukemia*
o Acute Lymphocytic Leukemia (ALL)
o Acute Myelogenous Leukemia (AML)
o Acute Undifferentiated Leukemia*
o Adult T Cell Leukemia/Lymphoma
o Chronic Lymphocytic Leukemia (CLL)
o Chronic Myelogenous Leukemia (CML)
o Hodgkin's Lymphoma
o Juvenile Chronic Myelogenous Leukemia (JCML)
o Juvenile Myelomonocytic Leukemia (JMML)
o Myeloid/Natural Killer (NK) Cell Precursor Acute Leukemia
o Non-Hodgkin's Lymphoma
o Polymphocytic Leukemia

* Myelodysplastic/Myeloproliferative Disorders
o Acute Myelofibrosis*
o Agnogenic Myeloid Metaplasia (Myelofibrosis)*
o Amyloidosis
o Chronic Myelomonocytic Leukemia (CMML)
o Essential Thrombocythemia*
o Polycythemia Vera*
o Refractory Anemias (RA) including:
+ Refractory Anemia with Excess Blasts (RAEB)
+ Refractory Anemia with Excess Blasts in Transformation (RAEB-T)
+ Refractory Anemia with Ringed Sideroblasts (RARS)

* Plasma Cell Disorders
o Multiple Myeloma
o Plasma Cell Leukemia
o Waldenstrom's Macroglobulinemia

o Other Inherited Disorders
o Cartilage-Hair Hypoplasia
o Congenital Erythropoietic Porphyria (Gunther Disease)
o DiGeorge Syndrome
o Osteopetrosis

* Other Malignancies
o Brain Tumors**
o Ewing Sarcoma*
o Neuroblastoma
o Ovarian Cancer**
o Renal Cell Carcinoma**
o Rhabdomyosarcoma
o Small Cell Lung Cancer**
o Testicular Cancer**
o Thymoma (Thymic Carcinoma)

* Other
o Chronic Active Epstein Barr
o Evans Syndrome
o Multiple Sclerosis**
o Rheumatoid Arthritis**
o Systemic Lupus Erythematosus**
o Thymic Dysplasia

*Refer to www.clinicaltrials.gov for additional information
**Not routinely eligible for participation in CBR's Designated Transplant Program Source: Medical literature and www.clinicaltrials.gov

Return to top
Emerging Stem Cell Applications

* Diabetes
* Heart Disease
* Liver Disease
* Muscular Dystrophy
* Parkinson's Disease
* Spinal Cord Injury
* Stroke

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A.F.

answers from Washington DC on

I donated mine when both of my children were born. I think it's SUCH an important thing to do, and because we didn't have any pertinent genetic defects in our family we felt that donation was the right thing to do rather than storage. I delivered both of my children at Inova Fairfax, and they can collect the cord blood for donation right there. Not every hospital is equipped to donate, so you need to find that out before you deliver.

Thanks for considering such an important and beneficial gift!

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A.W.

answers from Washington DC on

Hi -- If you are going to a hospital that doesn't have a donation program onsite (e.g., Sibley), you can still donate, but you need to submit your paperwork to the donation service no later than 34 weeks. Here's some information: http://www.marrow.org/HELP/Donate_Cord_Blood_Share_Life/H.... I did a lot of research on this and decided that private cord blood banking was not a good choice for us, but donation would have been had I known about the 34-week deadline. Re. private banking, here's some information I found:

Recommendation from the American Academy of Pediatrics:

1. Cord blood donation should be discouraged when cord blood stored in a bank is to be directed for later personal or family use, because most conditions that might be helped by cord blood stem cells already exist in the infant's cord blood (i.e., premalignant changes in stem cells). Physicians should be aware of the unsubstantiated claims of private cord blood banks made to future parents that promise to insure infants or family members against serious illnesses in the future by use of the stem cells contained in cord blood. Although not standard of care, directed cord blood banking should be encouraged when there is knowledge of a full sibling in the family with a medical condition (malignant or genetic) that could potentially benefit from cord blood transplantation.

2. Cord blood donation should be encouraged when the cord blood is stored in a bank for public use. Parents should recognize that genetic (e.g., chromosomal abnormalities) and infectious disease testing is performed on the cord blood and that if abnormalities are identified, they will be notified. Parents should also be informed that the cord blood banked in a public program may not be accessible for future private use.

3. Because there are no scientific data at the present time to support autologous cord blood banking and given the difficulty of making an accurate estimate of the need for autologous transplantation and the ready availability of allogeneic transplantation, private storage of cord blood as "biological insurance" should be discouraged.

A couple of articles:

http://en.wikipedia.org/wiki/Cord_blood

http://www.boston.com/news/health/articles/2008/07/29/at_...

Washington Post interview from July:

Washington: Knowing what you do about genetic testing and how much we are now learning about the makeup of our DNA, would you suggest cord-blood banking in terms of its future potential at saving our children from serious diseases, or would you suggest only doing it if you have a family history of a specific disease that may be treatable in the near future?

Rick Weiss: I have my doubts about the value of cord blood saving for most people. Experts have told me they have their doubts too. While there may be some exceptional circumstances when it may prove valuable to have some cord blood handy to, for example, treat your baby later in life, the odds are low and some doubt you'd be able to track down and get those crucial cells in time -- to use for transfusion purposes, for example, after an accident. That said, cord blood cells do seem to be an extremely valuable resource for research and increasingly for clinical purposes (as a source of cells to rejuvenate the blood system for cancer patients who have had chemotherapy and radiation for example). I think people should consider donating their cord blood to non-commercial cord blood banks, for use and sharing by those who prove to be a good match and could benefit from these deposits, much the way people donate blood through the Red Cross today.

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C.F.

answers from Washington DC on

I had both my girls at INOVA Fairfax and donated to the public banks from both of them.

The way I look at it, it was almost no effort on our part (ask to do it and then sign the form), the cells are now available to help others (I also donate whole blood regularly, so seems similar to me) and do research with, and if we should ever need it, there's a chance it will still be available in the public bank (without having to pay high collection and storage fees for years and years and years...)

As far as I'm concerned, donating cord blood is a win-win-win situation. I hope you do it.

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