At lunch we discussed the statistics – 1 in 17 is actually only a 6% chance the LD has Down’s Syndrome. If I was told I had a 6% chance of being run over by a bus if I went out the door would that make me stay at home? After all, there is a 94% probability that I won’t be run over by a bus. So basically we were being asked to do something to increase the odds from a 94% chance that LD has no chromosomal abnormalities to a 99% certainty that LD doesn’t have anything abnormal wrong with him or her. And there is a 1-2% chance that the procedure might cause a miscarriage.
I was not convinced by the stats but now I was also worried about my baby. So to be certain we vaguely decided to go ahead with the procedure.
We went back into the hospital where there was more waiting around. A very very young looking guy came to ask us if we would be interested in taking part in a research project that may result in women not having to have CVS. I agreed despite the fact that it means that I had to give more blood. Doright refused to give blood, he was not in the mood. A, the researcher gets a lovely midwife in to take my blood. She was taken aback when I tried to run away from a rubber glove. She took two vials of blood and went away leaving us to go back to waiting.
We were finally called into the room at about half three. There were four staff in this room, none of whom appeared to be Eastern European. One of them was a student; she asked my permission to be there. I made a joke about not wanting her to stay. They talked us through the procedure and I mentioned the fact that 94% sounds like pretty good odds, so I am surprised that is considered high risk. They too were taken aback; they spouted some jargon and changed the stat back to 1 in 17. Then they said didn’t you say you wanted this? I said yes but I am still surprised by the statistic that is considered high risk. They acted like hurt children – saying they consider it high risk and therefore recommended further testing, I wouldn’t have been shocked if they added so there.
We got on with it. They tried to find me in the system but my details were not coming up. Turns out it was because my name was spelled wrong (this is the fourth time we have had to correct my name). They corrected it. I was asked my date of birth twice, within the space of 2 minutes, by people standing about 1.5 metres from each other. They seemed not to be paying attention to me or anything but their computers. If I could have left my uterus I am sure they would have been happy. More gel, more ultrasound, thankfully no poking. There was some mumbling about a membrane, the presence of which was not really explained. I began to wish I had not agreed to this. Apparently my uterus was not in a conducive position. I was sent off to drink a litre of water.
More waiting, interspaced with water drinking. After all that water I needed to pee quite badly so Doright goes out to find someone. He found A – the guy who came over to ask us to participate in research and explains the situation to him – A had no idea what is going on and can not help. Someone overheard the exchange and said they sent someone else over.
I was soon back on the examination bed, gelled up and ready to go. I held Doright’s hand and looked away from my tummy where all the action was happening. It hurt like hell despite the local anaesthetic. They seemed to be done until they spilt the sample. They made a joke about it but I was not amused, I wanted this to be over.
It ended, finally, and we were then led to a room for me to recuperate. I had had enough of the waiting and asked Doright if we can go home. He asked the people in the room we had just came out of but we are told to wait for Vee.
Vee came in to tell us stuff we already knew and then asked me if I am rhesus positive – like this is a piece of information you should know. When I said I have no idea she said she may have to take more blood and that was the last straw. We began to explain how we felt our experience had gone – she talked over us and tried to defend the process. I was now getting very angry. She went off to check something and we began to walk out. She came back and we had a small argument in the corridor as we tried to escape – Doright told A he wasn’t interested in his explanations as he also tried to justify the process. We somehow got dragged back into the room. I was now wearing the face of someone who had lost interest half an hour ago. Vee turned her attention to Doright only to realise he was also just waiting for her to finish her schpeel so he could go home. She did and we left.
My stomach ached and I was still very angry, mainly with myself for not standing up for LD. Once home I got straight into bed and go on to the internet where I find out that it has been a common problem that black women have been given false results because black babies nasal bones don’t develop like those of white babies and the hormone situation is misleading as black women tend to have more of one of the hormones than other races. I try to read up on Down’s syndrome but I am too angry (and hopeful) to really concentrate. Doright convinces me to go to sleep. Tomorrow is another day.
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