*anyone considering Stem Cell storage - or ever heard of it?*

[lenaschildminding]

Hi, I'm expecting my third child, due in September. It's a strange, almost significant due date as it is close to my first son's birthday and anniversary. Sadly, I lost him to a terrible illness called Neuroblastoma, the day after his 5th birthday, 4 years ago this year. Due to this, I have been looking into Stem Cell storage, heaven forbid anything like this would ever happen again, we would then have an exact match for a stem cell (bone marrow) transplant.

Has anyone else considered, researched or even taken up this procedure? All it involves is extracting cord blood from the umbilical cord after delivery and shipping it off to a storage unit, where it is processed and stored for 25 years or until needed. It is totally harmless to mum and baby, it is pricey, but what price can you put on your childs life? It can be used in treatment for many cancers, blood disorders and research is being done into treatment for Parkinsons, Diabetes, Arthritis and other more common problems.

Any views please.....

Best of luck for September - and so very sorry to hear about your ds1. I can't conceive of what it must have been like - always feel so inadequate and clumsy when faced with bereaved parents (unimaginable pain...)

Back to your question - it costs about £1k doesn't it? If I have a 3rd child I will be electing to do it. The only reason I didn't do it before is that I hadn't until recently realised it was available and how useful it could potentially be.

We have found a company based in Plymouth, who seem to be the best priced. Unlike a few others, you pay a small deposit and they send you the collection kit and you only pay the balance if the cells are successfully stored. Many of the competitors want the whole lot up front! With this company the whole thing costs around £1300.00.

We did it with ds and will be doing it again with baby #2. My feeling about it is this. If we are blessed with healthy children and never need it, that's absolutely wonderful. But, I would not want to be in a position where we needed it, but hadn't done it, because of it being a one-time chance. As I told dh, at that point you would give all the money you had for those stem cells, but still not be able to get them back, once they are gone. It may be only a slight chance that you will ever need it, but I sleep better at night knowing that it's available to us.

Please look at my appeal in Childminders, nannies, au pairs section....

Many thanks.

I looked at it when I had DS but decided against it
as my hospital were not prepared to carry out the collection

Have you asked your hospital about it?

I did find a site where someone reviewed all the US companies and some of the international ones but I can't find it now, sorry

Have decided to go with Smart Cells, I've paid an initial deposit (reduced rate of £50, normally £75) and the balance of £1200 is due once the cells have sucessfully been collected and stored. If the collection doesn't happen for any reason or storage goes wrong, you don't have to pay the remaining balance. The unit is based in Plymouth, the collection kit is very straight forward, my midwife looked at it and said it's the same precedure they use for resus negative mums, so all the doctors and midwives will know exactly how to do it. You are given a temperature controlled packaging box to send it off in and it's collected by DHL, all paid for. All you have to do is remember the collection kit in your hospital bag and have someone to call DHL for you to come and get it. Smart Cells policy is that once the child is 18, it is then up to them what happens to the cells. After the 25 year period, if they have not needed the cells, there are options. 1) donate the cells, either to a needy recipient or to further research. 2) pay additional storage fees and keep the cells longer (if they have found this is possible). It seemed a good deal to go with, especially knowing they want little money up front and there are no annual fees for storage. The price you see is the price you pay for 25 years peace of mind.

Any one on the bone marrow donor register? A 9 year old friend of ours needs a transplant urgently... check out my appeal in the childminders, nannies, au pairs section

I'm so glad you found a company you like. I have always been very glad that we did this with ds. It just adds some peace of mind to being a parent.

OOh please could you give us the details of the company? I am thinking about it too - I was originally trying to just donate them but then it got my mind thinking that if ever we were in the position..... it's all very difficult isn't it?

Comapany details are as follows .......

Future Health - Cord Blood Care

Tel: 0870 8740400

www.futurehealth.co.uk

I am so very sorry to hear about your DS lenaschildminding. I don't really know what else to say, but I do hope this information helps. I am considering having it done after my next baby is born (not PG yet!! ). It is definitely worth it for the Peace of Mind it brings. God Bless you. xxxx

Sorry - didn't realise you had gone with Smart Cells (should have read the thread properly 1st, was rushing because I need to get DD's up and get them ready for nursery!!) Future Health are just one of the many companies that do this sort of thing - My Uncle just happens to work for them - and he is very nice man!! All the best for Sept LCM!!

No worries Captaindippy! I had all the info from Future Health too but eventually chose SmartCells

SMART CELLS INTERNATIONAL LTD
56-58 BLOOMSBURY STREET
LONDON
WC1B 3QT

+44 020 7436 9966 www.smartcells.com

Are you on the Anthony Nolan Bone Marrow Donor Register? I only ask because a little girl I know needs a transplant to save her life, she is 9 now and was first diagnosed with leukaemia the same time my DS1 was diagnosed with Neuroblastoma. Being the same age, they were friends in hospital and parents tend to become good friends too. The full details are under the childminders, nannies, aupairs thread titled Appeal for help.

Please take a look. Many thanks.

lenaschildminding how did you pay only £50 to smartcells .. their charges are tremendous .... the best company that i found was Cells Limited who charge £95 for the kit and £1025 for the storage .... have a look

www.cellslimited.com

their number is 0845 226 0844

lenaschildminding how did you pay only £50 to smartcells .. their charges are tremendous .... the best company that i found was Cells Limited who charge £95 for the kit and £1025 for the storage .... have a look

www.cellslimited.com

their number is 0845 226 0844

sorry about the repeated message

Sorry for delay, been busy having a baby!

The initial deposit to Smartcells was £50 instead of £75 because we booked at the Baby Show at the N.E.C in the summer.

There are many companies that pop up from nowhere offering this service nowadays. I would really hate it if I needed the cells a few years down the line, only to find out that the company I chose did not store them correctly/mixed up or is even bankrupt!

Given that we are talking many years of storage, I would feel far more confident going to a well known brand name. I would chose www.virginhealthbank.com without second thoughts, irrespective of costs.

hello, we are looking into this too. I've got information packs from 4 different companies, including Cells for Life, Virginhealthbank and smartcells. can't remember the other one right now.

i'm definitely going to ask what happens if the company goes into administration, as well as what their backup procedure is incase of electricity failure. some companies split the sample and store it in two locations.

my thinking is this - we have the means to do this, and we could really regret not doing it later. even though there is only a 1 in 20,000 (or something like that) chance of using the cells, we have no idea what medical research will do over the next 20 years, and there is also the chance that a sibling or other family member could benefit.

anyone else out there thiking about it?

When ds was due 2 years ago we chose Virginhealthbank. All went well until I went into labour 2 weeks early after 8pm. Virgin had given us a list of midwives who were willing to collect the blood from the cord but when we phoned round no-one would come out that late. The hospital had already declined to help us. So my poor husband had to do it. I think it ruined our birth experience a bit as when he should have been bonding with his son he was in a corner with a friendly midwife and the cord, puzzling over the instructions! In the end it was all in vain as despite his best efforts he had not collected enough blood to store. Virgin did however give us our money back with no quibbling.

So my advice is to try to persuade your maternity hospital to do it and if they won't, make sure your midwife will come out, even if your labour time is inconvenient.

Watch out for Smart Cells...saw this on the net

news.sky.com/skynews/Home/Storing-Up-Trouble-MPs-Round-On-Stem-Cell-Firm/Article/20071 131293057?lpos=HomeArticleRelatedContentRegion10&lid=ARTICLE1293057StoringUpTrouble%3AMPs RoundOnStemCell_Firm

I met smart cells and future health at the baby show at excel at the beginning of the year. I was only planning my pregnany at the time so I didn't pay too much attention to their sales shtick but now that I'm preg I'm looking into this alot more. smart cells seem the most professional although there isn't much between the two companies apart from cost. I've ruled out virgin and cells4life for a number of reasons, but I'm leaning towards smartcells at the mo. I will be having my baby at queen charlottes and the smart cells nurse seems more familiar with the hospital. also smart cells pays for the private nurse, so i don't have to organise that which is definitely attratcive to me.

I went onto the Parents Guide website and alot of the cord blood companies like Virgin and Smart Cells actually use a third party company in Plymouth to do store the cells - they're called www.bio-vault.co.uk - I don't know whether they store for parents directly tho;-)

Suzy

Watch out for smart cells

Suzy,

No they don't store directly

When we were comparing we found Cryo-Save to be the best www.cryo-save.com/uk

Parents Guide is an excellent website - i found it really useful.

i confronted smart cells about the sky report and i am satisfied with their answers. This is what they said...

• The Sky incident was an undercover operation by the reporter. We reported it at the time to the UK regulatory body ? The Human Tissue Authority who fully investigated the incident. The HTA have audited Smart Cells and our wholly owned laboratory and granted a full licence to procure, test, import and export, and store cord blood stem cells. They are happy with all our procedures.
• The HTA has subsequently changed the regulations on who may and may not collect cord blood, and it can now only be collected by a trained professional who is specifically licensed to collect cord blood. This type of incident may not happen again as a result.
• Our strict ?success criteria? ensures that we only automatically store cord blood that has a total viable cell count of over 200,000,000 cells. Anything below this amount is considered a low cell count and parents can make the decision to store or to destroy the cord blood.
• I would be happy to discuss this further with you if necessary, but I can confirm that all steps have been taken to make sure something like that does not happen again.

As you can see smart cells do own there own lab and are a lisenced company. i would also like to point out that other companies are quick to trash talk each otger and i couldn't get smart cells to say one bad thing about the competition. in fact they incouraged me to speak to the other companies so that i couldf make an informed chouice. there atre a few companies that i felt would have tried to sell me antyhgin just to get a sale.