A controversial and thought provoking question was posed to me and I've since given it a great deal of thought. The question was: "As a disabled person suffering an incurable disease, is it a responsible decision to bring children into this world, knowing their lives will no doubt be affected by your disability?" I believe it's a personal decision for any couple whether to have children or not, and no one should judge or pass an opinion when not standing in their shoes. With ever changing and improving medications, where once there was little hope, today is a very different picture. Who has the right to prevent a disabled person experiencing the joy and unconditional love, only a child can bring into a family? Children who have a disabled parent often mature quickly, experiencing and learning early important life skills, which are invaluable making them remarkable children in many ways.
Born with Gaucher disease and diagnosed at the age of five, I never gave much thought to having children of my own. Only once I married did this subject enter my thoughts. Twenty five years ago, not much was known about pregnancy for women with Gaucher disease. I consulted a doctor, who back then was the best authority; her advice to me was, there is no reason why I shouldn't have children and lead a normal life. After having a splenectomy (removal of the spleen) at age 14, Gaucher disease laid more or less dormant. It was only after giving birth that the disease reared its head in full force. Having no spleen, creates bone complications and deterioration, but with the Enzyme Replacement Therapy available to Gaucher patients today, it is no longer necessary and in fact deemed unwise to remove the spleen. The medication keeps the disease under control, liver and spleen are not distended, therefore posing no threat.
So back to the question; "Is it irresponsible to bring a child into this world if suffering a chronic disease?" I don't believe there is a clear cut answer. At the time the advice I was given was all I had to go on, but as the years have passed, much more is known about this rare chronic disorder. Fortunately the younger generation who suffer Gaucher disease, the earlier in life treatment begins the better, which has proven highly successful. Patients are able to lead normal productive lives and today there is no reason why a woman shouldn't become pregnant. I fall into a slightly different category, as many older patients like myself who had their spleens removed; medication has only been available since around 1991, simply arriving too late, as irreversible damage has already occurred in joints and bones.
When I became pregnant, not in my wildest dreams did I imagine years later, I would be diagnosed at the age of 44 with Parkinson's. People get married and have children every day all over the world, not knowing what the future will bring. Anyone can suddenly be struck down with a life threatening or debilitating disease. It's impossible to know what health issues might befall us. If we all were to think along this vein, no one would have children at all. However I highly recommend if there is a health issue, one should consult a health care professional, to understand fully any ramifications before making a decision.
Despite obvious difficulties placed upon children in a family with a disabled parent, I do not believe a couple in this situation should refrain from having children. There are many pros and cons in bringing up a family under these circumstances. Unfortunately I could never join my daughter on school trips, participate in any sports day or events of a physical nature; these were left for my husband to attend. However, being at home I was able to spend hours of quality time every day with my child which most working mothers aren't afforded the opportunity. All those hours we spent together were precious and created a lasting bond between us. If I weigh up the good and the bad, I believe that for me the positive things have far outweighed the negative. If I'd known what lay in store, would I still have had a child? My answer is unequivocally "Yes". I wouldn't have missed out on having my daughter for the world.
As humans we have an inherent desire to be positive and hopeful, looking towards a bright future, therefore bringing a child into this world is a true affirmation of this fundamental trait. What do you think?