Message Boards for the CF Trust

Replies: 10 Pages: 1

Beth's mum

Posts: 35
From: Southampton
Registered: 09-Feb-2004

Stem Cell Banking
Posted: 28-Nov-2006 09:41

Reply

Hi everyone

Can anyone help?? I am looking into banking my new babys stem cells but don't really know where to start!

I have had information from a company called Smart Cells and was wondering if there is anyone who uses these boards who has previously done this and what the procedure is?

If so, can you let me know which company you have used and any information you have about them?

Thanks very much

Sarah x

young mummy1

Posts: 39
From: Burnley
Registered: 05-Nov-2006

Re: Stem Cell Banking
Posted: 28-Nov-2006 10:30

Reply

Hi beth,
im probably being igrorant here but what are you doing i have no idea!

Love Lisa x

Katy_7

Posts: 8
From: cambridgeshire
Registered: 06-Nov-2006

Re: Stem Cell Banking
Posted: 28-Nov-2006 11:49

Reply

We had this done. We used http://www.cellslimited.com/ we found them to be the cheapest.

We had to discuss it with our consultant at our hospital as they dont usually do this but they would since the baby had a sibling with CF. We paid a deposit and they sent the pack. ONce the blood had been tested and stored they invoiced us for the rest. there were also payment plans available.

I found them very helpful when talking to them on the phone.

Katy

jules

Posts: 4
From: Wirral
Registered: 09-Nov-2006

Re: Stem Cell Banking
Posted: 29-Nov-2006 13:33

Reply

Hi, forgive if im being ignorant, (im new and am only just getting my head round CF) but how would storing stem cells help a person with CF? I've been on the baby cells website and cant see any mention of it helping a CF sufferer.

I'm 26 weeks pregnant with lpwcf, and would do absolutely anything that might help, now or in the future. Or is it you would need stem cells from an unaffected sibling?

Jules x

trollydolly

Posts: 38
From: west sussex
Registered: 26-Nov-2006

Re: Stem Cell Banking
Posted: 29-Nov-2006 14:56

Reply

Me too, Im perplexed by all this stem cells stuff. I would be grateful if someone could explain it. My daughter has Dilated Cardiomyopathy as well as CF and I believe they are doing stem cell trials as they have found that injecting stem cells into the persons heart can actually repair the muscle. But I dont understand how this would work in CF.

xxxx

Sandra

Posts: 18
From: Kent
Registered: 09-Feb-2004

Re: Stem Cell Banking
Posted: 04-Dec-2006 10:28

Reply

Hi
I am 38 weeks pregnant with a non-cf baby (tested via CVS at 12weeks) and I am mother to a 5 year old girl with CF.
We have decided to collect stem cells/ umbilical cord blood at birth using a company called cells 4 life. http://www.cells4life.co.uk
Stem cell research is still in is infancy and as yet there are no benefits for CF patients using stems cells that I know of other than for certain transplant situations where it helps with rejection. But it is a quick moving area of research that could hold a cure for CF and many other conditions.
Ultimately by collecting the stem cells now it is a bit like an insurance policy, I feel I would be kicking myself in a few years time if a breakthrough had been discovered and I had decided against going ahead. I have the opportunity now to collect stem cells, I am not going to get pregnant again so it is now or never. But most of the companies charge £1500 fr 25 years storage, so it is not a cheap option, as I say I see it as an insurance policy but with no guarantees.
You do need to discuss with your midwife/local hospital where you are going to give birth as they may have reservations. Becauase I already have a daughter with CF they were more willing to help than if I had no medical reason for the collection. Altough it has been made clear that if there is any emergency situation at birth this will take priority so there is no guarantee of collection
Sandra

SarahE

Posts: 24
From: Kent
Registered: 06-Nov-2006

Re: Stem Cell Banking
Posted: 04-Dec-2006 10:47

Reply

I had a baby in July wocf and had my umbilical cord blood taken to store the stem cells as I have a lpwcf. As Sandra said it is really as an insurance policy in case stem cell research reaches that point that the stem cells collected and frozen from my son's birth may help my daughter. I used the company Smart Cells.

In my area the midwifes are not allowed to do or even assist in the collection of cord blood and so my husband had to step in and do the collection himself (although I have to say it is quite straight forward) I had a home birth and so this was made even easier as it was a lot calmer than if we had been in hospital and we were able to take control a bit more. However, as Sandra said the cord blood collection comes after the baby and Mum's safety.

If you need any other info please ask!

Good luck with the new baby

Sarah
x

Beth's mum

Posts: 35
From: Southampton
Registered: 09-Feb-2004

Re: Stem Cell Banking
Posted: 04-Dec-2006 13:04

Reply

Hi everyone

Thanks for all your replies - Thought you might like to know that I had this reply back from Ask the Expert over the weekend -

'At present the CF Trust does not have an official line in the use of
stem cells but is funding research into the use of stem cells and would
of course welcome any favourable developments in this area which could
benefit people with CF.

We have been asked about storing cord blood on a number of occasions and
recently we consulted an expert in the field who is currently doing
research in this area - incidentally funded by the CF Trust. He replied
as follows:-

"Stem cells are cells which are found abundantly in the umbilical cord
and in the bone marrow. These cells have the ability to change into
other specialised cells such as white cells, to fight infection and red
cells to carry oxygen around the body. There has been recent interest in
the ability of these cells to repair damaged organs such as the brain,
heart and lung.
Therefore we are carrying out research to see if there is any
possibility that they may be useful in CF. However, this is at an
extremely early stage and, if successful, it is likely that therapy will
only be available many years from now. To date, successful stem cell
therapy has been carried out in blood diseases such as leukaemia."

The storage of stem cells is not routinely available on the NHS. There
are companies who will do this privately One such company is Future
Health Care which is approved by the Department of Health
(www.futurehealthcare.co.uk).
This is a useful site which we have checked again today and contains a
great deal of up to date information on stem cells including storage,
costs, collection etc.

Our expert felt that if one could afford to store the cord blood it
would be worth doing as it is without risk and could be very useful in
the future. We agree with him.

Having read this I decided to go ahead and bank the babies stem cells and have paid the deposit to a company called Smart Cells ( as mentioned by SarahE).

Sarah E - I have spoken to my midwife and she seems to think that they will do the collection for us. If for some reason they won't when I deliver, is it really that simple for my husband to do this? I'm a little worried about it! Also - did you have the maternal blood tests done before the birth or after? and how have you found Smart Cells to deal with?

Thanks

Sarah

SarahE

Posts: 24
From: Kent
Registered: 06-Nov-2006

Re: Stem Cell Banking
Posted: 04-Dec-2006 13:32

Reply

Hi Sarah

I have had no trouble using Smart Cells, they were recommended to me so I felt a bit more comfortable using them. I have found them very helpful and organised. The collection was easy enough, when you receive your pack you will see that you have a bag with a needle on one end (crudely put!) and it is as easy as putting the needle into on of the veins in the cord. Gravity then means that the blood goes into the bag (it is like those bags that they use when you give blood). It is preferential to do the blood collection before the placenta comes out as the blood flow is better apparently. I had my bloods done on the day I gave birth as I had already agreed this with my midwife. I then had a set done afterwards (cant remember when now-post baby brain!!

) When we got our pack we sorted all the paperwork out and then familiarised ourselves with the contents and we did this a few times before Hugh was born so we all knew what we were doing. My Mum also got involved as I felt that the more people that knew how to do it the better, just in case! I know what you mean about being slightly stressed as I felt like that and leading up to and during the birth kept thinking that I hope it works, hope there's enough blood etc etc! Its worth it in the end though

Thank you for posting the response from ask the expert, it was really interesting to read.

Good luck with the baby, ask away if you need any more info,

Sarah
x

Beth's mum

Posts: 35
From: Southampton
Registered: 09-Feb-2004

Re: Stem Cell Banking
Posted: 04-Dec-2006 14:17

Reply

Thanks Sarah

I have now paid my deposit with Smart Cells and should receive my pack by Wednesday so will have a good look through then.

I offically have 6 weeks before the baby is due but Bethany was a couple of weeks early so I wanted to get this sorted out before it got too late!

I feel so much better knowing that someone else has used this company and are happy with them - as you will know it has been a big decision to make!

Thanks again

Sarah x

Sandra

Posts: 18
From: Kent
Registered: 09-Feb-2004

Re: Stem Cell Banking
Posted: 07-Dec-2006 15:20

Reply

Hi

Interesting to read the reply from the expert, thanks for posting that.

When you receive your pack there are step by step instructions on how to collect the blood if needed (including photos). My husband was also prepared to collect the blood if necessary but as the hospital seems happy to be involved all the better. I now only have 2 weeks to my due date I am just hoping this baby arrives before Christmas
Sandra