The nightmare continues

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.

The nightmare after ultrasound...

Went in to the hospital today. Was looking forward to seeing first ultra sound of baby – mainly because I am still not convinced I am pregnant! I know it’s silly but I cannot help it, I have had no real confirmation of the pregnancy. I think the uncertainty is mainly because I haven’t really been that ill or had many of the other symptoms...need to go to the bathroom a lot but that isn't that new as I drank a lot of water even before my pregnancy.

Hospital isn’t too far from home so it was nice to have a bit of a lie in. Doright came with; we took the bus, which was novel. I was a little stressed as I had no idea where we were going. I followed a pregnant woman in front of us; her husband was rubbing her back as she waddled towards a glass building. “That will be me soon” I thought – Doright appeared to be thinking the same thing as he squeezed my hand and smiled at me.

The hospital building is very new, not sure how old it is. The receptionist’s English wasn’t that great – you get used to this in London- but she managed to communicate what needed to be done. She asked me about a white book – I don’t have one. She doesn’t tell me what it is for or why I don’t have one. She does tell us we need to go and wait in the waiting area round the corner; there were 3 people in front of us. If we wanted ultra sound pictures they were £2 a picture. We paid for 2 – she gave me the wrong change, I told her so. She was apologetic. I too felt sorry about having to point out she was attempting to steal from me. It was now 9am.

There appeared to be no one actually taking blood in the area where we were supposed to have the blood test - at this point I was not sure what the blood is for as thought I was here to look at the baby! About a half an hour later a Black woman came through and went into one of the rooms without saying much. A few minutes later a Chinese lady came by, filled the cup holder by the water dispenser full of plastic cups; we assumed they were the cleaners until they started calling women into the room. Before this they spent another 15 minutes preparing and talking amongst themselves before finally calling in the first woman. They were talking about combined test – I had no idea if this is why I waiting or what it’s for, so I went back to ask the receptionist who confirmed that was what I was there for – she doesn’t explain what the combined test is for. I felt slightly discombobulated.

As we wait a loud South African woman complains about the NHS on her mobile – I want to ram it down her throat. Her taxes wouldn’t provide this kind of care in her home country. She appeared to be planning shotgun wedding. I frowned at my husband; he smiled at me. He also picked up on the whinging and the references to the wedding planning.

A couple in front of us were called into the ultrasound room, the guy appeared not to have realised he is supposed to be part of the party. The girl, who exposed us to a rather large (and unwelcome) view of her upper butt crack as she got up, gave him the black girl eyebrow raise and he shifted himself – exposing us to his boxer shorts. I felt slightly violated.

We were called into the blood test place at something past ten – we were expecting to be out of there by 11am – doesn’t look like it would have been possible now. I sent a text to my office telling them it looked unlikely I would be in at 11. On our way into the room another member of staff came over to tell the black lady that if there is a red sticker in my white book (the mysterious white book again) they should take extra blood for research. I told them I didn’t have a white book – they ignored me and the black woman told the new one that she did that anyway.

We were shepherded in. I tried to explain to the ladies in the room that I was willing for them to take extra blood for research purposes and attempted to show the Chinese one the paperwork I have signed – she told me to show everything to someone I’d never met or heard of.

I warned her that I hate having my blood taken – I have been known to clutch the arms of strangers with a pincer like grip when having a blood taken for a malaria test, tests so quick and relatively painless that two year olds could administer them. She ignored my warnings and prepped my left arm – I sprung up and ran towards my husband, who looked slightly bewildered. I felt slightly embarrassed (and lets be honest ashamed!) and took myself back to the lady who looked like she thought I was crazy.

I settled down (read stared in the opposite direction to the needle and clenched every muscle in my body) as she took my blood. We were ushered out to meet a young eastern European girl at the door who appeared to be looking for us.

She took us into the ultrasound room. They introduced themselves and pointed me to an examining camp bed thingy covered in purple tissue. I lay on it and the girl apologised for her cold hands – they were really cold, colder than mine, which is saying something. She squirted some gel on my tummy and I saw LD for the first time – I clearly looked shocked, (Doright thought my face was a picture) this is the first real confirmation I have had that my pregnancy is not a figment of my imagination.

They began to do medical things that I don’t have much interest in – I was looking at my child. It moved around quite a bit. Apparently the baby’s position was bad for their measurements; I asked if this means the baby is in a bad position, they just frowned at the screen. No, apparently babies move around a lot – this one doesn’t seem that interested in moving anymore though. It’s sleeping and refuses to be disturbed (this is really Doright and my child – I love my sleep and he can sleep through a muezzin’s call to prayer from mosque on his doorstep!) They check the baby’s heartbeat, it is very very fast, like a guinea pig’s actually – LD is alive but lazy! The baby doesn’t like having it’s picture taken and keeps covering it’s face – it actually looks like it is sucking it’s thumb.

The male ultrasound person is getting frustrated and starts to poke my tummy in the hopes LD will turn. Apparently the baby is not for turning. It just moves its arms in a “I am not that interested” way and goes back to whatever it was doing before the poking.

After what seems like hours of this, they sent us out again, advising that I have something sweet to eat to try to get the baby to turn – I have some chocolate. We came back and waited some more. They eventually called us back into the room. The baby had turned but not in the direction they want. In fact, when I lay down again it turned right back to the position it was in before. More poking, which was beginning to really hurt as the chap was putting so much pressure on my stomach his arm is shaking. I told him it hurts, he told me to go and empty my bladder. When I came back, it was back to the poking but still nothing. Ultrasound guy was frustrated – he kept calling LD naughty because the baby would’t budge – he was defeated by a baby that is 5.5 centimetres tall from head to toe! I am a little proud...

So we were told we have to use another machine, which would better see the baby but they had to check if it’s free. We went back into the waiting area. We were the only people there from the morning. I began to feel sorry for LD – the poking cannot be that much fun – it wasn’t that much fun for me. Doright thought perhaps he should leave and go to work. I followed him into reception and felt slightly miserable that he was going but said nothing. I hugged him goodbye and the black nurse from the blood taking room came to see if I was ok. I think I looked really miserable as Doright changed his mind about leaving and called his office to tell them that he would’t be in and he needed someone to do something that afternoon. I was not listening as I was now worried about LD. The frowning Eastern European doctor with the heavy hand had said nothing reassuring.

I needed to urinate before we go into the new room and accidentally walk in on another lady – she hadn’t answered my knock or locked the door. The incident gave me something else to think about. There were three hospital staff in the new room but I was glad the ultrasound guy from the first room is no longer around. They led me behind some curtains that they pulled shut and then left me to strip from my waist down and cover up with a sheet – I was glad to see the sheet covered everything, even when I was lying with my legs up in the stirrups. The girls, one of whom is a doctor – she looks about 19 - told me it wouldn’t be as bad as a smear test, like that should have been reassuring. They pulled out what appeared to be a large dildo and covered the end with gel before putting a condom on it (she asked me if I was allergic to latex, I was slightly traumatised) – I was really not looking forward to this.

They inserted the dildo into my shanishani and then we were back at the tummy poking. Doright was impressed with the clarity of the picture; I was just wishing this situation were over. After a few more minutes of poking (it seemed like a lifetime to me), a change of doctor moving the dildo and more long faces it was over. We sat down by a computer attached to the machine. The male doctor, also apparently Eastern European, looked solemn. He went through some stats, everything was fine till he got to LD’s lack of nasal bone and the abnormal difference in my pregnancy hormones. Apparently these combined with the abnormal sound from a valve in the baby’s stomach mean that the probability that LD has downs syndrome is high. I was slightly stunned – I hadn’t even realised they were testing for Downs (that explains the poking and frustration) till late in the session. It was all very sudden.

The doctor was heavy on the technical talk and qualifications of the numbers. A 1 in 17 chance sounds high. There is a lot of talk of risk evaluation. I was slightly confused by the jargon but I immediately thought “This is a black baby, off course its nasal bone is not developed!” I said so – he looked taken aback but managed to brush my sudden assertiveness aside. Apparently the ethnicity of the baby had been taken into consideration. He recommended Chorionic villus sampling and said we would have to come back tomorrow or sometime over the next week. We both looked slightly stunned. The other staff were shuffling uncomfortably, looking equally dazed.

They moved us into another room to wait and the doctor went off. He came back to tell us he had managed to get us an appointment for that afternoon – we were slightly relieved. The sooner we get this over with the better. We had a few hours so we went off to lunch not realising the day will become worse.