Last Friday we went for the MRI scan… oh my life! Little miss claustrophobic did panic but I was very brave and luckily baby was good and stayed nice and still so it only took 20 minutes or so.

We also had a normal scan and it seems as though we are back to having 2 dodgy looking kidneys again, the consultant stressed that it could be nothing or it could be serious (he will be able to tell better when I am more preggy) and again, said that along with the CDH it could be a sign of a chromosome problem, he again offered us an amnio to get answers. We are aware that the amnio carries a 1% miscarriage risk, which is pretty tiny but when you carrying a baby with a condition that has a 1 in 2500 chance that 1% seems pretty high! Plus we had to consider whether we would terminate if everything went tits up… it took us almost three years to get this little one and we have seen him waving and chomping on his hands… not a chance we wouldn’t give him a chance. Anyway, termination was the topic of the day… the consultant was great, he was in no way suggesting we had one but had to stress that we legally only had one week left to consider it…

Frankly, the whole morning put us both in a gloomy mood… not helped by us getting on the wrong park and ride bus and going on an hour and 20 minute tour of Nottingham instead of a 5 min journey down the ring road! Oooh we were glad to get home!!

It has been a difficult week waiting for the results of the MRI, we finally got them yesterday and the good news is that his liver is definitely where it should be and not up there in his chest! Only his stomach and bowel is up, which is obviously crap but it is not as bad as it could be… it is possible that it could migrate up later but the consultant is hopeful it will stay put. Unfortunately they didn’t measure his lungs which the consultant seemed a bit pissed about but he said he will be able to get a better look at them at the next appointment on the 12th April…

Yesterday we met with one of the surgeons at QMC. We thought he had the look of a mad professor about him, which can only be a good sign! I’ve never met a stupid mad professor… Ok I’ve never met a mad professor but you see them on the telly…

Anyway, he sat in on a scan with us so that he could see what is going on, he too agreed that he thought the liver was still in baby’s abdomen. He said weeks 22-28 were critical for baby’s lung development so if the liver stays down during that time it would be a positive. He also said it was looking like the right kidney was looking ok, the left still looks a little dodgy but it is a good sign that only one looks affected.

As things stand at the moment we are at the positive end of the spectrum with a 70% good outcome, however this can change and the major thing is how the baby copes once he is out… this is something that nobody can predict and a major factor. It could be a lot worse though.

We are back at QMC on the 15th March to see the consultant and he has sorted it for us to have the MRI that day also at QMC, to save us the trip to Sheffield. He will then send the images to them to get the results… no sneaking to Meadowhall on the way back then, hey ho I guess it will save some pennies!

Well, that’s the good news…

The bad news is that during the 20 week scan the sonographer noticed that baby’s stomach was next to his heart, she muttered something about a hole in his diaphragm, adopted a sad face and said she was so very sorry. We were then ushered into the private room to wait for the midwife to give us an appointment with the specialist at Queens Med and sent on our way with only Google for company…

Oh, and a parking ticket, since our scan had taken longer than expected (thanks a bunch hospital!)

After reading the whole of the internet and shedding many many tears I decided to stop reading the whole of the internet (it is a very scary place) and concentrated on staying with www.cdhuk.co.uk (They have been wonderful, hence all the links)

I have waffled off on one again… Right, so CDH… basically our boy has a hole in his diaphragm, after seeing the very nice man at Nottingham QMC we have learnt that it is a left sided hernia (the most common) and his stomach is already in his chest cavity and has pushed his heart over to the right. Our consultant is fairly confident that his heart is healthy and is working as it should and also he is fairly certain that his liver is still below his diaphragm (very important as the liver is big and stiff and will obviously take up more room in the chest cavity leaving less room for the lungs to develop) However, baby boy also has dodgy looking kidneys which the consultant is keeping a close eye on…

What this all means is, I will have to give birth at QMC, possibly be induced a week or 2 early… baby will then be whipped away and immediately put on life support, and hopefully he will become stabilised enough to undergo the surgery to correct his diaphragm and jumbled up organs. The operation is *pretty straight forward* but the problem lies in getting baby stabilised, some babies lungs just don’t develop well enough to survive… Currently the overall prognosis (outlook) for babies diagnosed with CDH is 50%.

A simple diagram describing CDH

So, what happens next: On Wednesday we are meeting with the consultant again and also with one of the surgeons to discuss what will happen and to ask him/her questions. We are waiting on an appointment to come through from Sheffield Hospital for an MRI scan, our Nottingham consultant insists that the lady there is the best for looking at fetal lungs. The MRI should hopefully give us a better idea of what is going on in there. At the moment, so far I feel like he is in good hands, which is reassuring at least!

Long term I am guessing there will be a lot of scans and a lot of fingers crossed and hoping that things don’t get worse…

Anyway, it is shit but he has a chance so we will cling to that and since he is a mixture of me and Steve I’m pretty certain he will have the stubborn, pig headed, never give in gene and will fight when he gets out.

I have put in a ‘follow’ doo dah (bottom right) for anyone who wants updates on what is going on… it is rather exhausting explaining everything and there is no way I will remember what I have and haven’t told people!