setbackI planned to update “Baby and Cleft” with some new entries before now, but I had a nice relaxing weekend with my husband and tried to stay offline as much as possible.  My father-in-law is in hospital and my husband has been going to see him every night after he finishes work, so I’ve hardly seen him and I wanted to spend some decent time with him, even to the point of having our meals together as we hadn’t done that properly since my father-in-law was taken into hospital in early October.  On Monday I had a follow up scan/appointment at Birmingham Women’s Hospital.

I thought this check-up would just be a quick one following the diagnosis scan we had there on September 30th, so I said to my husband there was no need for him to go with me as it would mean him taking half a day off work.  Plus there was a question mark over whether they would send him to Ireland for a week with his work that didn’t happen, and he only found out he wasn’t going last Friday.  So I went with my Mum and Dad, my Mum had booked the day off to be with me in case my husband had to go to Ireland, and I thought it would be nice for her to come in with me and see Frankie on screen, as she’s never seen a scan before.

The consultant who did the scan seemed to take absolutely ages, and I remember he was paying lots of attention to the back of Frankie’s neck and also his feet/legs, and was concentrating very hard, so I had an inkling that something was up and I got very tense about it.  When he finished he said he’d picked up a couple of things and led me and my Mum into a side room and then a few minutes later he came in with a nurse and another woman, I assume she was a counsellor but I’m not sure, it was all a bit of a blur and a whirlwind.

He then went on to explain that he had seen Frankie’s cleft lip and could confirm that his palate was almost certainly affected too – that was fine I was prepared for that – and that his right foot was showing signs of talipes which is a club foot, but that he couldn’t tell the extent of it.  But even more concerning and worrying for him he said, was the fact that the nuchal thickness of the skin at the back of Frankie’s neck was 8.2mm when it should be around 6mm for this stage of my pregnancy, and anything above 6 is a cause for concern.  This could he said indicate a chromosomal abnormality (obviously meaning Downs Syndrome, Edwards, Pierre Hughes or something like that) and strongly recommended I have an amniocentesis test as a matter of urgency.  However, he said there was a risk that I could go into premature labour, so it was entirely my decision, but that if I did decide to go ahead then I could have the test there and then.  He also said I could have some genetics blood tests that my husband would have to have too that might give some clues as to why Frankie’s got a high nuchal thickness.

So we rang my husband, he agreed with me that the tests had to be done so told his work he was going to join me at the hospital – luckily he doesn’t work too far from from Birmingham Womens Hospital. Once I said yes to the tests they had to prepare everything anyway so that gave my husband time to get there. I then proceeded to have the tests and we both had the blood tests, and I was in agony afterwards, I could hardly move.

The nurse who did the blood tests then explained what would happen next to us – that we should get the first round of results from the amnio by this Friday, and the rest of the amnio results within about 10 days to 2 weeks.  Once they were happy I was as comfortable as I could be, they let us go home.  My husband arranged to work from home for the rest of the day.

But from the moment I had the amnio done I didn’t feel Frankie move at all.  I’d gone from feeling him move every hour in some form to absolutely nothing, and the more time went on the more I was worried sick.  I said I’d give it till 6pm and then ring delivery suite triage at the Worcestershire Royal Hospital, so at 6pm when he still hadn’t moved I called them and they said go straight in.

Even though they were really busy I was seen more or less straight away, and when the duty midwife went to listen to his heartbeat, and pressed the machine into me, he suddenly gave a MASSIVE kick that even she felt – I was so relived I almost burst into tears!  He’s been moving constantly ever since, but it was very scary when he didn’t move at all for at least 7 and a half hours after the amnio test.

A few weeks ago I agonised and agonised about having the amnio test and I really didn’t know what to do for the best with it.  At 12 weeks I had the Downs Syndrome screening tests (blood test and nuchual thickness test) and I have a letter in black and white saying that the blood test result was that my downs risk was 1:100000, and Frankie’s nuchual thickness test result on July 15th was 1.29mm which was fine.  It even says in that letter no further testing is recommended, so given the risks of miscarriage with an amnio test we decided not to have it on the basis of those results.

I was offered it again when Frankie was first diagnosed with a cleft lip on 30th September at Birmingham Women’s hospital and I agonised about it like mad, I even posted in the CLAPA facebook support group about it, and the general consensus was that the risk was too great of losing him and many who were offered it didn’t have it done.  In the end my husband and I decided the risk of losing him was too great to have it done. In a way I wish I had had it done then.

So now my husband and I are playing the waiting game yet again, and it is sheer HELL.  I took yesterday off and rested all day, but all the pain and discomfort I was feeling had pretty much all gone.  Today I’m working but taking it very easy indeed, what I do isn’t stressful and I’m sat down all the time, and I’d rather be doing this than brooding/thinking about it as my husband is back at work (he worked from home yesterday to look after me, and he did a great job of it too) and it gives me something to focus on and helps the time pass more quickly.

All we can do now is wait until we get the call from Birmingham Women’s Hospital with the results, but a million and one thoughts and questions are going round my head about the future if the results are not good.  It doesn’t bear thinking about.  We’d got our heads around the cleft lip/palate and we’re prepared for that and have accepted it, but now we’re thrown into such a tailspin I don’t know whether I’m coming or going right now.

It is so hard and not knowing is the killer. We can’t even look in Frankie’s room, my husband has had to close the door so we can’t see anything. And the biggest thing now is that I just don’t understand why they’ve let me get this far – 28 weeks – without picking up that he had anything more serious other than cleft lip/palate.  I know that scans aren’t foolproof and they can’t see everything on them and sometimes things aren’t seen early on and are more noticeable when babies are bigger, but his nuchal thickness reading at 12 weeks on July 15th 2013 was 1.29mm which is absolutely fine, and I’ve been through my green notes with a fine toothcomb and there is no mention of nuchal thickness again till the scan I had last Monday, when it was 8.2mm and high enough to cause them serious concern.  Surely they’d have looked at that in the other scans I had – he’s had lots of them – he must be one of the most scanned babies in Britain at the moment.

I’ve had the most AMAZING support from my husband, family, friends and some wonderful comments on Facebook and from the CLAPA support group on Facebook, and I can’t thank everyone enough for taking the time to message me and write to me – it means the world to us both, especially since we’re trying to be strong right now for Frankie’s sake – something that is easier said than done.  It is also easy to say don’t worry and don’t panic, but until I get that call and I know what we are up against I’m not going to be able to not do either.

Right now I’m left with more questions than answers, and more questions keep coming to me all the time.  All I know now is sat here writing this entry, with him kicking away inside me, that he’s already loved more than anything in the world, and I hope God will guide me and my husband in the days ahead to make the right choices and the right decisions.