A trend or a lifesaver?

Angelina and Brad have done it and so have Joost and Amore. Along with numerous other celebrities, they’ve banked their baby’s umbilical-cord stem cells. But should I? Should you?

Ever since I fell pregnant six months ago I have felt as if my rapidly growing tummy was an invitation for marketers to sell me things. I need multivitamins to ensure my baby grows strong… I need the most expensive child-safe cot to ensure that my child gets the best start in life... I need to read the latest books on parenting to ensure I know how to boost my child’s self-esteem. And if I don’t buy those things then my blossoming maternal guilt kicks in.

So when I picked up a pamphlet in my gynae’s waiting-room advertising the opportunity to store my baby’s stem cells from his (yes, I’m having a boy) umbilical-cord blood to potentially help cure an array of potentially life-threatening diseases he may get in later life, I was curious. Is this just another way of making money out of vulnerable parents-to-be or is this something worth investing in, a once-in-a-lifetime opportunity to capture blood rich with stem cells?

So what are these magical stem cells?
Stem cells are the basic building blocks of all human tissue. These cells have the capacity to grow into different types of tissue that make up various organs. Research mostly centres on their curative quality because stem cells can be injected into the blood or an organ where they can grow to replace damaged tissue.

So far, the main use of stem-cell therapy has been in the treatment of childhood leukaemia, lymphoma, thalassaemia, sickle-cell anaemia, Fanconi’s anaemia, aplastic anaemia, immune deficiencies and some metabolic disorders.

However, a lot of the hype around stem cells is around the future potential they may offer in curing an array of diseases and conditions, including type 1 diabetes, spinal-cord injuries, corneal and retinal reconstruction and Parkinson’s disease. The use of stem cells to regenerate heart tissue following heart attacks or heart disease is especially exciting.

Is there a catch?
Stem cells can only be used if they are compatible with the tissue of the recipient or rejection could occur. In the past, stem cells have only been obtainable from bone marrow. Registries of bone-marrow donors exist worldwide to facilitate close genetic matches for patients needing treatment for, say, leukaemia. The process is costly and the chance of finding a donor incredibly low. But the recent business of banking a baby’s stem cells offers people an almost guaranteed match because the donor will always be compatible with his or her own cells, and family members can expect a high degree of compatibility, too.

Although stem-cell storage has been around in countries like the United States for the past 10 years, it is still new in South Africa. The first South African couple to store their newborn’s stem cells was in December 2001 through the company CryoClinic, which has its storage bank in Brussels. Two more companies now offer stem-cell storage. Lazaron Biotechnologies is the first to have a bank in Cape Town. More recently, Netcells, which is affiliated to the Netcare hospital group, has a storage bank in the UK and South Africa. The cost of collection and storage is similar for each – and it’s not cheap, even if it is for 20 years of storage.

What to expect

Technically, a person can have his or her stem cells banked at any age. But the reason there is a trend to collect those from the umbilical cord of a newborn is that these stem cells have the best vitality levels. Stephen Purcell, medical director of CryoClinic, says, “Umbilical-cord stem cells have 10 times the regenerative capacity of those from adults. They are also cheaper to obtain and have less chance of being rejected when donated to another person.”

Many people feel worried that the procedure of obtaining stem cells from a newborn might be painful or damaging.

The procedure: quick and painless
Liza Ackermann, marketing director of Netcells, who has saved the stem cells from both of her sons, says, “Initially I was unsure of the procedure and was worried that I’d have just given birth and doctors would be interfering with the birth and my bonding with my baby. But it took about four minutes and I hardly noticed it occurring.”

If you’ve decided to have your baby’s stem cells stored, you’ll need to contact the bank you’ve decided to use. You’ll be advised about payment options and the collection. Collection takes place at the time of delivery. Once the umbilical cord has been clamped and separated from your baby, your doctor inserts a needle into the umbilical cord to drain as much blood as possible, usually around 100mls.

There is a five to 10-minute window of opportunity to collect the umbilical-cord blood once the baby has been delivered.

Your physician will then mark the sample and courier it to the bank. Experts there extract the stem cells and freeze and store them in vials or bags in liquid nitrogen tanks. The specimen must reach the bank within 48 hours.

To date, the banks’ fees cover 20 to 21 years of storage, which critics say is short if you consider the chances of a child developing a life-threatening illness during that time. But according to the New York State Department of Health Council on Human Blood and Transfusion Services, “There is no evidence at present that cells stored at –196 degrees Celsius in an undisturbed manner lose either their in vitro-determined viability or biological activity. Therefore, at the current time, no expiration date needs to be assigned to cord blood stored continuously under liquid nitrogen.”

Ackermann says that parents have the option to renew the storage time at a nominal fee after 20 years if the stem cells have not been used.

Is it for you?
Although this therapy is still new in South Africa, approximately 4 000 people have so far saved their infant’s stem cells. Many have been motivated to do so because there is already an inherited disease in the family that can be treated by stem-cell therapy. “About 30 per cent of our clients are parents who’ve actually lost a family member to cancer or have a child who has a disease that requires stem-cell therapy,” says Ackermann.

Netcells has seen two such cases recently. A couple from Kwa-Zulu Natal stored the stem cells of their second child to try to help their first child who has leukaemia. Another couple from Botswana stored the cells of their second child after discovering their first suffers from sickle-cell anaemia (a genetic blood disease).

Indeed, worldwide the majority of stem-cell transplants occur on a sibling of the baby whose cord blood was banked. Internationally, around 7 000 to
8 000 transplants have taken place using stored umbilical-cord blood. None has yet taken place in South Africa.

Reality vs risk

As with all new things, there are sceptics of stem-cell storage and therapy. Certain researchers and doctors have expressed concern about selling a service that has little chance of being used. The odds of needing stem cells differ depending who you speak to.

Early literature on the topic put the chances at one in a 100 000 of ever being needed. The American Academy of Pediatrics says that no accurate figures exist but estimates range from 1 in 1 000 to 200 000. Harry Minnie, CEO of Lazaron, says that new research that was released in 2006 puts the chances at one in 250 during a person’s lifetime.

Purcell says that his company’s services should be regarded as a luxury. "So few people will ever need to use their stem cells. I’ve been shocked at the pressure some overseas companies have put on vulnerable parents to do this, when they simply can’t afford it. "Parents must realise that it’s a speculative purchase, unlike when you spend money on a car seat or pram, where you’re guaranteed a benefit."

Ackermann agrees, "We leave the decision up to the parents. As a mom, I am aware of how many things are pushed and punted towards new parents. Our stance is that this is primarily an issue of affordability, which gives you extra medical insurance and peace of mind. If you can afford it, you should strongly consider storage, especially if you have a family history of family illnesses treatable with stem cells."

The cost of stem cell therapy
Another important concern around stem-cell therapy is the costs involved in the actual therapy itself, which are largely prohibitive for most people. If your child has leukaemia, you would first require chemotherapy and possibly radiation treatment to kill off all the diseased cells. Then you would require the stem-cell transplant to re-grow the child’s immune system. However, Ackermann makes the point that the costs of finding a matching donor – as much as R100 000 – is one that could be avoided if you have stored your child’s stem cells.

Another reality is that if your child already carries a genetic disease, his or her stem cells can’t always be used for treatment as the cells carry the disease. For this reason, it’s often a healthy second sibling whose stem cells are then donated.

There have been cases reported in the States where parents have tried to retrieve stem cells for treatment only to find that the stem cells are “contaminated” with whatever disease they’re hoping to treat.

Another concern is that the majority of people needing stem cells are adults. Their size means that the dose of stem cells retrieved from the umbilical cord is inadequate. There have been a few cases, also internationally, where there hasn’t been enough blood to transplant when the person has come to retrieve it.

So, will I store my son’s cord blood? As my due date gets closer and my stomach and bank balance are becoming stretched with the imminent arrival of my baby, I have decided not to store his stem cells. My decision is largely financial: there are just too many other expenses. I’m also fortunate enough to come from a family that has not suffered from many of the diseases stem cell therapy promises to cure. And I’m also an eternal optimist.

However, I marvel at the amazing medical advancements that humans have made and feel that for families with genetic diseases, this is an exciting field that holds hope to a degree never seen before.

And a gynaecologist’s opinion
Dr Mogi Lingham, of The Glynwood in Benoni says, “Saving your infant’s stem cells is the latest in cutting-edge medical technology, although it is still very new and a bit controversial. Because it’s so new it’s difficult to comment on how well it’s going to be used in the future.

“Presently, the banks only store for 20 years and it’s also uncertain as to what happens if the stem cells are needed after that. It’s also expensive, putting it out of reach of the average person. I’d say it’s a bit of a gamble and only really for people with the extra money to spare.”