I'd had my daughter's cord blood privately collected and stored two years ago so assumed even though I had changed obstetricians that it would be pretty straightforward to have this done again. After all, I was booked in to the same hospital.
After over a month of agonising, phone calls and research, I've come to the conclusion that different obstetricians have different attitudes towards private cord blood storage as well as different levels of experience with cord blood collection. I could be wrong but itt seems to me that some obstetricians refuse to collect it for private storage, others do so without supporting it and others do so quite willingly.
My obstetrician informed me when I first ran the idea by her that the hospital I was booked into had changed policy, meaning that midwives could no longer assist with private cord blood collections at the birth as the hospital was scared of being sued for anything going wrong. They also refused to let external midwives (used by some private cord blood storage companies) in to collect the blood. She said that if I had a caesarean (which was highly likely) it would probably take the obstetrician involved around 30 minutes to get back to the placenta (which would have been set aside in a dish) to collect the cord blood as it would take this long to finish the surgery and finish stitching me up etc. By 30 minutes she said there was a high likelihood that the cord blood would have congealed. It would also have a higher incidence of infection than if it had been able to be collected immediately.
She urged me to consider public cord blood donation, which I had done and in fact was still open to. The hospital was a major centre for OzCord, the public donation people. She talked about it being easier to find a match if needed by a relative for leukaemia etc but I don't think she realised I was keen to collect my child's cord blood purely for their own use, which surely had to be a 100% match. I was collecting it for potential use if a stem cell cure for type 1 diabetes was found at some time in the future.
She also talked about the fact that giving the cord blood back to the child would only give it a 'double dose' of its own genetics. She had a valid point, but with diabetes, sure the islet cells grown from the stem cells might peter out due to them being somehow diabetic islet cells and therefore the child go on to develop diabetes again, but if it took the amount of time it took for mine to peter out for instance, the child would still get 12 diabetes-free years out of their new islet cells! And perhaps there would still be enough cells left over for the next infusion. Or some other technology available to produce more when needed?
Anyhow, I certainly did have my own ethical dilemmas (guilt) about trying to save my own child's cord blood for some futuristic very slim chance cure when the child might never even develop diabetes (1 in 30 chance for each child). If another child or adult could use it now to actually cure their leukaemia for instance, it definitely felt selfish to hoard it. I wanted to find out exactly what the cure rate was with cord stem cell use in these diseases but the contact at the public donation centre was unable to help me with those statistics.
Anyhow, as it turned out the public cord collections were closing down for two weeks at Christmas time, from 23rd December, so given that my due date was now 28th December, I could not donate the blood even if I wanted to.
This fact, plus my own relating of the reasons I sought to save the cord blood (ethical dilemma of having cord blood for one child but not the other, fact that diabetes could be such a devastating condition - end stage renal failure, cost to community etc), seemed to sway my obstetrician. She said she had no idea that the public collection people closed down over Christmas (I said it would be such a shame if no one could use the stem cells). She said she would work with me to collect the cord blood. Still, she did caution me that I would be their first priority and there was a chance it might not work. I think she also was a bit uncertain as she, herself, had not done a private collection on her own. Understandable.
When I mentioned the cord stem cell issue to my former ob, who had done the collection for my first child, she said it should be straightforward and she would have no hesitation with collecting it again for me as long as there were no complications at the birth. Could see no dramas. She actually had some private cord blood brochures on display in her waiting room and spoke about one doctor who was able to get an amazing amount of cord blood in his collections.
So obviously there is quite a wide range of attitudes out there amongst obstetricians with regard to private stem cell storage.
I still do feel uneasy about the ethics of private storage for a possible future when there are people who could use the stem cells now. However the public donation not being an option anyway due to them being closed over Christmas made my part of the decision-making with this pregnancy easy.
I wondered how many people did donate? How many did they need? As many as possible? I would ask any future friends if they were planning on donating as my guess is that few do.
** Please note: I'm not a private cord blood collection advocate and don't want to sway anyone else. I just wanted to document it as it was a concern for me during my pregnancy. There is still a very slim chance that this blood will ever be used for my child and it is expensive to have it collected and stored. I know it is not an option for everybody. There were many times I wish I hadn't even heard about it but once I had, and certainly once I'd collected the cord blood for my daughter, I felt compelled to do the same thing for my son.Posted by M.A. at November 23, 2005 07:34 PM