Stem cell storage is a godsend for some parents, when and if baby falls ill, but beware, there are cost implications too. So what exactly does it entail? And should you consider it?
Stem cells are the original building blocks of life, the body’s founder cells which differentiate into all the specialised cells that make up the human body (skin, blood cells, muscle, bones, nerves).
When a new baby is expected every parent starts planning and dreaming about their child’s future. Everything from nursery to university is discussed and planned, often becoming a reality. But one aspect of your child’s future that you can’t always plan for is their health, with the worst case scenario being a potentially fatal illness.
"Insure" your child against life-threatening blood related diseases
By harvesting and storing a baby’s stem cells, gathered from the placenta and umbilical cord, you can “insure” your child against life-threatening blood related diseases, such as leukaemia, lymphoma, thalassemia, Fanconi’s anaemia and sickle cell anaemia. So, why isn’t this part of the normal birthing process? Something available to all pregnant women?
A simple answer could be the cost – around R13,000 to R20,000 (see below for details), which many doctors or gynaecologists feel reluctant to recommend, as the chances of using these stem cells are rare.
How stem cells could save a child's life
For the Williams* family of Cape Town, a stem cell transplant could be the difference between life and death. Their 7-year-old son suffers from sickle cell anaemia, a potentially fatal illness, with his only hope of survival being a stem cell bone marrow transplant.
So, when Diane Williams* fell pregnant 2 years ago with her second child, she didn’t hesitate to store stem cells from the baby’s umbilical cord and placenta to be transplanted into her older son.
1 in 4 chance of a successful transplant
Although, unlike a transplant for the baby the stem cells were removed from, a sibling has a 1 in 4 chance of a successful transplant. At present, their son is undergoing extensive testing before having this stem cell transplant, which, if successful could hopefully see his illness through as a thing of the past.
“This family was lucky, as they were aware of this service and knew it was vital for them. But not every family thinks this far ahead or is aware that their child might have that remote chance of developing a rare illness,” explains Dr Yvonne Holt of Netcells Cryogenics.
“It’s not just the baby and siblings that can benefit. Although the chances go from 1 in 4 of a match in a sibling to 1 in 8 with a parent, this beats the often almost insurmountable odds of finding a suitable bone marrow donor.
It could end up cheaper to store the stem cells taken at birth than start a local or international search for bone marrow
Should you need to source bone marrow for a family member worldwide, it will cost you R75,000 to start a local and international search with the South African Bone Marrow Registry, with an eventual cost of anything between R150,000 to R250,000 and could take up to a year to find a match – not great when your baby is battling a fatal illness.
According to Caroline Robertson from the SA Bone Marrow Registry, although they are a non-profit organisation, these are purely the costs incurred in activating these searches and transporting bone marrow if found.
The hopeful future of stem cells and stem cell storage
“Stem cell cryogenics is a form of insurance,” explains Dr Holt. “We are aware that the cost makes it prohibitive for many people, and would love to see a public bank in South Africa to serve the community where people donate their stem cells. This would come about when someone may have banked stem cells with their first or second baby and then donates any further stem cells to a public bank.”
Stem cell use in regenerative medicine
According to Dr Stephen Purcell, medical director at Cryo-Save, there have been 2 major advances in regenerative medicine in the last 5 years.
The treatment of brain problems
“The first is in the treatment of brain problems such as cerebral palsy. In the United States they are carrying out research and trials on this and have had success with a 2-year-old girl who was diagnosed with cerebral palsy and who, because her cord blood cells had been stored, was transfused with these and within 6 months, showed enormous improvement in her condition.”
The mechanism for neurological damage is unknown, but what is known is that this is only effective if the cord blood is administered within 2 years or even better within 6 months of the damage.
“Current research shows a hugely beneficial effect in some patients and a mild effect in others,” explains Dr Purcell.
“This is a dramatic advance. In the United States they have been storing cord blood for about 15 years and now have around 400,000 blood stem cells stored and send out about 20 stored specimens a month to children for treatment.”
The treatment of type 1 diabetes in children
The second breakthrough is in Florida where children who have developed Type 1 diabetes
are put on a trial programme, infusing their cord blood collected at birth.
“There appears to be a reduced insulin requirement observed in these babies after treatment with their own cord blood. The mechanism appears to be related to preservation of partially damaged insulin producing cells. Although it’s purely speculative at this stage, this may provide some slowing of the loss of insulin production in these children,” comments Dr Purcell.
So where do you start this whole process?
Register with one of South Africa's stem cell cryogenic companies
You register with one of South Africa’s stem cell cryogenic companies. They will deliver your collection kit and explain the process for the collection. You then contact your gynaecologist, doctor or midwife, who are generally used to this procedure, but if they have any queries they contact the company storing your cells who will go through it with them.
Collecting the cord blood
On the day of the birth you arrive at the clinic with your collection kit, and as soon as the baby is born, the cord is clamped, cut and the baby handed to the mother. Then, the obstetrician or midwife inserts a needle attached to a special blood bag (part of your collection kit) into the umbilical cord vein of the placenta to drain the blood. There’s no pain or discomfort for mother or baby.
Collecting enough blood
This is a simple procedure but has to be done carefully to ensure that a minimum of 60ml of blood (maximum 200ml) will be collected in a sterile condition. The average amount of blood collected is 100ml, as obviously the more blood collected, the more chance of harvesting a good quantity of stem cells.
Using part of the umbilical cord
A new development is the use of part of the umbilical cord itself, which is extra rich in stem cells. These are known as Mesenchymal stem cells, which in time (when full research has been done) will be used in bone cell, cartilage and even liver to regenerate new cells, taking over the functioning of dysfunctional cells.
There are also advanced clinical trials being carried out using these cells in the areas of cardiac disease, stroke and other forms of brain damage and bowel and joint disease.
If you use this extra cord blood, about 15cm of undamaged umbilical cord will be cut off, cleaned, the remaining blood squeezed out by the gynaecologist or midwife, and then placed in a special tube to be sent with the blood bag in a temperature- controlled box to the laboratory to store your cells.
This blood is viable for 72 hours with the best results if the blood is processed between 24 – 36 hours after collection, and cord tissue viable up to 48 hours after collection.
Logged into the system with a unique registration number and barcode
Once this arrives it’s carefully logged into their system with a unique registration number and barcode.
Checking the viability of the cells
The next step is checking the viability (cells deteriorate quickly and can become unviable) of the cells, and whether there are enough to store, with only 3% per month failing this test.
At the laboratory the cord blood stem cells and cord are processed and stored in special laminated cryobags (recommended by the European Union), and placed in an additional external protective bag before being placed in an aluminium metal cannister for protection against mechanical damage and cross-contamination.
From here they are cryogenically frozen at 196°C, which means literally frozen in time – making them viable for the next 20 or more years. When your child turns 18 she becomes the guardian of these cells, deciding whether to extend the contract.
Stem cells aren't stored with electricity
So, what happens if Eskom has a power cut? The good news is that your cells are still safe.
“Our cells are not stored with electricity,” explains Dr Holt. “We use tanks filled with liquid nitrogen for storage, which are monitored electronically, with generators, which would take over in emergencies.”
At present these stem cells are only used for bone marrow transplants but research is being carried out for many other conditions. “There is groundbreaking research being done around the world,” enthuses Dr Holt. “This is just the infancy of this type of medicine.”
Areas being researched for the use of stem cell transplants
- Regeneration and regrowth of cardiac muscle.
- The repair of bones in non-union fractures.
- Type 1 diabetes.
- Auto-immune diseases.
- Nerve cell repair e.g. cerebral palsy, Alzheimer’s disease, Parkinson’s, spinal cord injury, stroke recovery.
- Organ repair for example, liver and kidney.
Why consider storing your baby's stem cells
- Family history of specific illnesses, such as blood cancers, disorders, inherited immune deficiencies.
- Siblings with diseases that could be treatable by a stem cell transplant.
- Families of African origin and mixed race marriages, as it is extremely difficult to find suitable donors, who are seriously under-represented in public banks.
- Form of medical insurance – giving you peace of mind.
- Remember that more and more diseases will become treatable with stem cells.
The costs involved
Blood & Tissue*
Processing & Storage Fee
Pricing inclusive of VAT
- * Includes a R3 000.00 discount (R1 000 on collection and R2 000 on processing) if storing both cord blood and tissue.
- Pricing includes first 10 years storage. No annual storage fees.
- Should you require the stem cells for your child during the first 5 years of his/her life, then you will be given a full refund on the Processing & Storage Fee.
- There are no retrieval fees. You can withdraw your stem cells at any time and should you do so, you will be refunded the proportionate unutilised storage fee.
- Maternal blood PCR testing is required to ensure no transmission of diseases rendering storage and/or transplant of the stem cells invalid. The cost of this testing is for your own account.
- For more information, terms and conditions, visit the Netcells Cryogenic website.
- Local storage in Cape Town lab: R12,996 for umbilical cord blood; R16,500 for umbilical cord blood plus tissue (including VAT).
- International storage in Belgium lab: R16,800 for umbilical cord blood; R19,800 for umbilical cord blood plus tissue (including VAT).
- These payments are for a 20-year contract to store these cells, which can then be renewed for a further period.
- A small monthly storage fee is payable.
- Payment plans include 12-month and 24-month payment plans, as well as full payment and credit card options.
- For further information, terms and conditions, visit the Cryo-Save website.
The Lazaron Lab is now operating as Cryo-Save South Africa.
Prices updated September 2011.