furious

June 01, 2010

furious

What gives some people the right to play God? Just because they have some medical training they think they can decide who is worthy of living and who should be cast aside. It makes me so mad!

Oh i guess i should backtrack a little and fill everyone in with the events of today, then i can rant about that woman who made me so cross.

Today me and Sir travelled to a specialist centre in a hospital 30 miles away to get more tests done to find out the extent of William's problems. They did another ultrasound to look at his heart, kidneys and other organs, and then a high-speed MRI scan of his brain. Then we had to wait to see the consultant to find out what the results were and basically William was given a definite diagnosis of tuberous sclerosis, based on the fact that he has multiple cardiac rhabdomyomas (benign heart tumours) and multiple cortical tubers (malformed areas of the brain). We were told that since the cortical tubers appear numerous and widespread even at this early stage it is likely that William will have significant developmental delay, severe learning difficulties and epilepsy starting with infantile spasms before the age of 1. Finn shows no signs of any of these problems however and there are no signs of William's other organs being affected at this stage.

Then the consultant started telling us about our 'options', including the fact that late abortions are allowed in the UK in cases where there are chromosomal or developmental problems with the baby, and he started describing how such a procedure could be carried out by injecting a chemical into William's heart but that the procedure would carry a level of danger to Finn as well. Halfway through i stopped him and explained that there was no way i would even consider aborting William, no matter what he has wrong with him because he is my baby and i will love him just the same as his brother and sister. And Sir agreed with me, saying that abortion would not be an option for us. So the consultant gave us some literature to read on the condition and said we would get an appointment to bring William in for further testing when he is about 1 month old and we would go from there. And also he talked us through our birth options and said he will need to liaise with my consultant at the hospital near us when we discuss my birth plan because it depends on how the twins position themselves and whether William is ready to come out first or second as to whether he will recommend a caesarean or not.

After the consultant had left the room we were waiting to be seen by a genetic counsellor when the nurse who had also been in the room with us started trying to convince us to change our minds. She talked about some of the children she worked with with the condition, basically saying that those mose severely affected had no life at all and surely it was unfair to our other children to burden them with having a brother like that who would probably never even learn to talk or write his own name. She started rambling on about how it would be too late once he was born and we wouldn't be able to get rid of him then even if we wanted to, that now was our chance to do the right thing for our whole family and put him out of his misery. i was so shocked and then i started to get really angry. How dare she make those types of judgements about a child who hasn't even been born yet? How dare she say that his life won't be worth anything? How dare she tell me what is right for my other children when she doesn't know them? How dare she imply that in order to be a decent human being, worthy of having a place in this world, that someone needs to be able to talk and write? Sir could tell that i was getting very stressed so He told the nurse to keep her opinions to herself and to leave us alone, and she left with a huffy look over her shoulder at us. i actually went and made a complaint about her because i was so cross, but not sure it will do any good.

The meeting with the genetic counsellor didn't tell us much more, only that me and Sir will need to be tested for the condition as it is hereditary and can be so mild that people don't know they have it - so we've arranged that for a couple of weeks' time. But she also said that most cases are caused by a new genetic mutation so it's quite likely that neither of us do have it. It's important to know though because we would have a 50% chance of any future children having the condition also if one of us did carry the gene for it. Also it can be quite tricky to find the specific part of the chromosome which is affected in each individual, but they will take a blood sample from William shortly after birth and run tests on it to try to find which part of his DNA is affected, then they can use that to do something that i can't even remember now.

Getting tired, think i should go for a nap. But i do feel better now i have ranted about that rude woman and got her out of my system. William will be very much loved and wanted and a precious part of our family and we will do our best by him, just as we will for all our children. i know just how special those types of children can be from my work at nursery, not that i have met any with William's specific condition but all of the special children bring something extra to their lives and touch the hearts of everyone they meet and it would be wrong of me to kill him just because he isn't perfect and doesn't conform to some people's idea of a 'normal' person.

Ok rant over.