Several months ago I was reading newspaper articles online when I came across the story of Chloe Levine, the Colorado toddler who was seemingly cured of cerebral palsy after a cord blood transplantation using her own cord blood that her parents had stored for her at birth.
She had been unable to crawl or walk, her speech was poor and her right hand was permanently clenched. She had her cord blood re-infused and within four days, her speech improved and her hand started to relax. She can now ride a bike. I reflected upon what my own life might have been like today if my mother had been given the option of cord blood transplantation for me.
I was born three months premature in the 1970’s. At 18 months old and still unable to walk, I was diagnosed with cerebral palsy.
A taxi driver asked me once if there was an operation to "fix that". I laughed and told him that there isn’t a cure for brain damage. Now, it seems science has overtaken nature and for Chloe Levine and other children like her, there IS a cure for brain damage. So why don’t I forgo my holiday and use the money to have a stem cell transplant to try and cure myself of cerebral palsy?
A decorator I hired told me he knew I’d grab a cure if there was one and he bet I hated being disabled. I told him that no, in fact I did not want to change. He was stunned at my response, looking at it only from an able perspective. So why am I perfectly happy having cerebral palsy?
The Unethical Past of Stem Cell Research
Stem cell transplantation originally came about through abortions, either directly by using the tissue of a baby who had been terminated or indirectly by using embryos that are leftover from the IVF process. Although many people are pro-choice and see nothing wrong in this, I see an unborn baby as a person. At the moment of conception, the blueprint of life is there, including what color eyes and hair the child will have. At three weeks, the heart is beating. I would not want any unborn baby to lose his or her life, partially on account of myself.
Although scientists have discovered how to get the same stem cells from the umbilical cord of newborn babies, which is much more acceptable to me, it still does not erase the history of the procedure.
Transfusion Carries its own Risks
I am too old to receive my own cord blood, since I was born before cord blood banking began. Any stem cell transplant I have would be using another person’s blood. This means that even though the sample would be matched to my blood, there is always the chance that it could be ineffective due to a rejection of the foreign stem cells.
There is also the risk of transmission of diseases from the blood into myself. vCJD, a fatal brain disease in which the brain becomes sponge-like, has been transmitted in utero from mother to baby. For instance, a 22-year-old mother began showing signs of the disease during pregnancy and was given a Cesarean section. Her baby daughter was born brain damaged with the condition. Prions cannot be destroyed by sterilization so any woman using the same operating room would be at risk. No one knows how many people carry the illness or how many babies are exposed in utero.
Tests are not carried out on blood, including cord blood, so nobody can guarantee its safety. I would not use cord blood until they implement a screening test.
I’m Happy Being Me
Finally, and most importantly, being disabled made me who I am today. I started my writing career due to being post-operative and in a wheelchair. If it hadn’t been for my surgeries, I would never have discovered how much I love writing.
I would never have done the charitable work that I love because when you’re going through it, it makes you consider others in the same boat.
I met my children’s father because we shared a common bond – we’re both disabled, and know without a doubt I would not have my beautiful children.
There are certain perks, too, like not having to queue for fairground rides and being allowed to move to the front till at the post office.
I would not be who I am today without being disabled and I love being me.
Joanna is a freelance health writer for The Mother magazine and Suite 101 with a column on infertility, http://infertility.suite101.com/. She is author of the book, 'Breast Milk: A Natural Immunisation,' and co-author of an educational resource on disabled parenting, in addition to running a charity for people damaged by vaccines or medical mistakes.