Bad News...

I went into work today – rather than taking a half day unpaid like I did the last time. I wish I had not. I missed the train I was going to catch at 3pm – I am not moving so fast these days. To add insult to injury it started to snow as I made my way to the station and the train I did catch (a delayed train to Bedford) stopped running as it had become unsafe! Luckily, I was at Herne hill and could catch a train to Victoria almost immediately. Needless to say I was 30 minutes late for my appointment. At UCH this generally means you will be waiting an hour – which is what happened.

When we finally went into the room for the ultrasound (our fourth!), which was exactly the same room I had my CVS in (doesn’t bode well). There were three women in there. Vee, the midwife with the unfortunate bedside manner was doing something in the back while a young Asian lady asked me to prep myself for the ultrasound. There was a third lady, older, slightly grey haired, who did not introduce herself or explain what she was doing there. Doright explained to the Asian lady that the reason we had been referred was something to do with “reverse ductile (!?)” and the fact that they were unable to view the baby’s hand on the last ultrasound. The older woman did not appear to be listening. I made a comment about how I didn’t mind if the baby had 3 fingers.

They went through all the same things that the other techs had been going through whilst talking amongst themselves. I wasn’t entirely sure what was going on but remembered and told them that I had paid for some pictures. The older woman seemed irritated by the intrusion and told me to wait. I felt, like last time I was in that room, as though I was intruding on their work. Granted it seemed that there was a problem with their equipment and she kept having to turn off the computer she was sitting on in order to record things.

Everything appeared fine though they were having a hard time taking measurements as the baby kept moving. The older woman kept mumbling beautiful until they finally managed to get a visual on the right arm and hand which again proved really difficult, they changed to 3d view to get a better look and Doright commented that it looked like potato. It was then she said started referring to the baby as abnormal. Doright said tried to ask a question about that (as in what do you mean “abnormal”) she told him that his questions would be answered when they were done as any interruption would mean that they would have to start the ultrasound again (!?) so we sat quietly as they went through their measurements, with her continuing to talk to the other lady about the “abnormal” hand. She was quite firm with him and I was taken aback at the insensitivity of her reaction. She said something about “oh I think we have a thumb” while we held hands and squeezed each other. I was quite distraught at this point because I had not really seriously thought there was anything wrong with the baby – my comment about fingers was a through away comment. At first it appeared that the whole arm was “abnormal” and was short but on closer inspection it appeared that the defect only affected the baby’s fingers – they seem to have stopped growing and are fused together, the younger tech hadn’t been taking the measurements properly.

They appeared to complete their measurements and took us into another room, into which they both followed us. The older lady – who the Asian lady told us was very experienced in this field- told us what she believed she had seen. I asked her if it was possible the child’s hand was in a fist she said no – she appeared offended that I had even questioned her expertise. Her perception was in the grand scheme of things this was not a major defect (and thus we should deal with it) – she said this child would definitely be left-handed. We asked a few questions – most of which she could not answer because the “management of the defect after birth” is not really her field.

We explained that our experience of the foetal medicine unit had not been great and we were reluctant to continue with the hospital – I mentioned her mumbling about the hand being abnormal had been thoughtful. We explained that her behaviour had not been helpful – she appeared not to understand what we were referring to and reiterated her comment about having to restart the procedure if they were interrupted. She said she had not been aware that we didn’t know there was something wrong with the baby’s hand as I had made the comment about not caring about the number of fingers the baby had. I looked at her in slight shock, when I made that comment I was actually telling them that the other techs hadn’t been able to see the hand! She clearly really hadn’t been listening to us. She pointed out that in her long experience our baby’s defect was not very serious, as it only appeared to affect the baby’s hand. Doright explained that whilst this may be the case we were not expecting a defect at all so all of this is a bit of a shock to us. I explained that as this child will be black it was of concern to me that it will also have a defect, as it is hard enough trying to get a black child to deal with their colour without further demands for strength on their part. She said that we come across as intelligent and would probably cope well with the situation – she also mentioned that as the baby appeared not to have any other defects and we both had fully formed functional hands we were unlikely to have another child with this particular defect.

After more comments (attempts at reassurance?) about the baby’s defect being relatively minor, she said she would refer us to the “hand team” and book us an appointment in four weeks for another ultrasound. They left the room to go and write up the notes. Before she left the Asian woman commented that her colleague was very experienced in these matters; she appeared to be attempting to be excusing the other woman’s emotional detachment and apparent lack of tact. But that might just be me thinking I would be embarrassed by a colleague behaving in such a matter of fact way about someone’s emotional situation.

I turned to Doright (who was doing brilliantly, trying to ask questions and explaining our previous experience, while I just stared in shock) and said, “our baby has a gimp hand” before I burst into tears. Whilst I was crying the women came back in and the older one – who appeared to be taking the lead now – began to tell us about the possibility of a termination. I was shocked by it, partly because she appeared not to have noticed that I had just been crying and partly because at no time during the previous conversation had we intimated that this may be an option for us. She said although it was an option she would not sign off on it and would have to transfer us to another doctor. She was quite insistent about having to transfer us – we told her it was not something we were thinking about but I guess she had a script and had to finish what she was saying. It appeared as though she had realised that she had missed out one of the things on her list of things to suggest in this circumstance. Her returning to tell us about termination as an option was a bit of a shock and though she probably meant well in her head it was unnecessary as we had not hinted that we may want to do that. There is something very strange about the way this unit deals with their patients – it appears to be all management of risk and not so much to do with you.

She left us again and wrote up her notes. LD has a “transverse defect of the hand distal to the metacarpal and phalange joint” i.e. the baby’s fingers have not developed properly; they appear to stop before the first knuckle. (Found this out on during my extensive research session) I am not sure why we are coming back in four weeks to look at the hand again – the defect is unlikely to change between now and then but then I am not a doctor and the lady was not inclined to explain herself to us.

We left then and took a cab, because of the snow it took us ages to get home – I was cold and still in shock. I got straight into bed and on the Internet when I got home – it appears to be the thing to do after a brush with the Foetal Medicine Unit. I was picturing my baby as complete and I find it difficult to accept the situation. I woke up in the middle of the night and cry. Doright held me and let me cry. Nicknamed the baby “stumpy” which seems to have stuck now. I am so worried about how the child is developing now and how it will look and whether our families will accept it.

I did not sleep well at all.