Apparently, not everyone goes for their 20 week scan. Being first-time parents (and comparitively quite old) we did. That was the start. Poor nurse, we were the first scan of the day and I'm still baffled as to how quickly events went from "awww" to "oh f**k". Despite the number of scans we've had since, I'm still baffled as to what I'm meant to be looking at. The brain I can recognise, but that's about it. Anyway it was reasonably clear to her at least that where a diaphragm was meant to be, there wasn't much of one and internal organs where they shouldn't be. A consultant was acquired quickly and she confirmed the prognosis and sent us up to Bristol for further scans with the Fetal Medicine Unit. On the plus side, everything else seemed mostly normal (bar the two-vessel chord).
Two days later we were in Bristol. The consultant at Bristol agreed, and said it was pretty bad. It was here that a new term was introduced to us - the LHR ( Lung-Head-Ratio ). Ideally it should be greater than 1. Ours was measured as 0.2. Much later it became apparent that the LHR can be pretty much a random number generator depending on how the measurements are made and who makes them. One day where we had lots of scans, we got three very different numbers each larger than the previous (altho none of them anywhere near 1). A cardiologist came along to check bean's heart (all good, other than the extra pressure being put on it from the excess number of organs in the chest cavity). It was also made clear that Bristol could and would give us fantastic care, but that the survival rate was in the region of 20 to 30%. Scans would be frequent to make sure that everything was progressing ok, and that no additional complications would take us by surprise. We had an amnio to check for any further genetic abnormalities other than being ginger and Welsh. Bizarrely, these don't show up in an amnio result.
On our second visit to Bristol (a week later to pick-up the amnio results) we met more consultants. This time neo-natologists: there were two, but one was mostly silent. The magnitude of the problem was laid out in black and white with greater or lessor optimism depending on who was providing the information. The neo-natologist in particular was on the negative end of optimism.
A description of what we could expect when Bean was born was given. Essentially we were told that Mother would be induced, that as soon as Bean's shoulder appeared he would be paralysed and sedated to stop him screaming and reduce pain. He's then intubated (a tube stuck down his throat) in order that he could be provided with air. He would then be whisked away into ITU and we would be left waiting (I'm *really* not looking forward to this bit... Bean whisked away without even being able to hold him, possibly never being able to hold him).
Later on we understand that it takes up to about 10 days for the baby to stabilise and once that's happened then he will go into surgery. During that time they will make every effort to ensure that the lungs are made to work and grow using a variety of techniques that they have at their disposal.
It was Bristol who provided the information that there was a procedure that maybe able to help Bean. This is FETO (details here) and the potential to be put on a trial where we may be able to get the procedure. FETO is a technique where a balloon is placed in the trachea in order to lock the lungs. This is keyhole surgery on steroids. By blocking the lungs, the fluid that normally moves in and out of the baby's mouth is trapped, creating an excess of pressure which promotes growth in the lungs. The lungs also start to mature.
There is only one place in the country that does it (and as it turns out, only one person as well). Professor Kypros Nicolaides at Kings College Hospital London who we were warned was blunt but a genius. Correct on both counts. He's also lovely (altho' I wouldn't want to work for him).
A week later we were in London being scanned to death. Research Fellows when bored will continue scanning until there is nothing left to scan. They will then repeat this until someone talks to them! We saw a sequence of people, all of whom were checking whether we met the right criteria, making sure that there wasn't anything else wrong, taking measurements and basically making sure they had the answer to any question that Prof might ask them. We were then set to wait until the great man arrived.
Inevitably he arrived with an entourage, and a swarm of activity ensued, clearly this was a man with very little time - we were prepped that he was about to see us and that we should get ourselves ready so we didn't miss our slot. He saw us, along with all the Research Fellows we had met earlier and about 5 hangers-on who weren't introduced to us and was blunt at us. It was bleak. 10% chance of survival unless he operated and then it would go up to 40%. Did we want to have it done that afternoon?
The 40% figure covers all risks. Those associated with the pregnancy, the diagnosis and the FETO procedure. Kings College aren't part of any trial - there is a EU trial on the benfits of the procedure - they offer it as standard to anyone in our situation (severe pulmonary hypoplasia) although patients need to be referred. We declined to have the procedure that afternoon and settled for the following Tuesday.
Tuesday. This would now be Week 26
The following Tuesday we arrived all set at 11am. Prof had been called away on an emergency, it was unclear when he would return, but if we came back at 3pm then he should be around then. We went to a friends house for a few hours, returning at 3. He still hadn't returned and hadn't been in touch. Maybe 4. We waited. At about 6 he arrived. Unfortunately there were two people being operated on that day and we were second. We went in at about 7:30. With a crowd of about 20 onlookers. In fairness, whilst that sounds reasonably horrible and we were slightly taken aback by it at first, it does have to be done, people must be able to see how the technique works and be trained otherwise it'll never spread. And he was very good and pretty much the crowd did disappear into the background. It was also made clear that if Mother was not happy she just had to say the word and they would leave.
The procedure is amazing and very scary. The Mother is treated in a similar way to an amnio: local anaesthetic. Then bean gets a large quantity of drugs as he needs to be unconcious. Apparently, the more you drink - or have drunk in this case, given Mother has been tea-total for the last 26 weeks - the slower the drugs act on you to make you unconcious. This trait is passed onto Bean. He was very slow to go under (poor thing), and every time Prof give him a prod, he'd kick back. He got there in the end. Once that's done, then it's down to keyhole surgery - single port endoscopy apparently - small hole in the abdomen for the camera and balloon. After a little bit of searching, and air bubbles getting in the way, the Bean's larynx is found, the balloon deposited and inflated with a saline solution. The procedure takes under an hour. Mother is made to rest for an hour to make sure that everything is settled, and then checked that the balloon is in fact in the right place (using ultrasound) and then allowed to go home. It was about 8:30pm by the time we got out. There are potential problems to the procedure: the same ones that there are with the amnio.
Following the procedure there is an increased risk of infection as well as pre-term labour. This latter point is obviously much more scary now that should bean be born, he will almost certainly be unlikely to survive. And someone needs to pop the balloon. Scary pictures are now included in the maternity notes - which are beginning to look like War and Peace at this point - and extra jewellery in the form of a medi-bracelet are given to Mother designed to scare any medics who come in close proximity. We later learn that we are "known" about, that "there is someone in the South-West with a FETO baby" and that there would be large sighs of relief when the know that the balloon is gone.
A week later we were back in Bristol on our usual fornightly scan. We had heard that the other person who had FETO the same day we had, had had a really good scan. A massive increase in lung size. Ours didn't seem quite so optimistic. The lungs were possibly bigger proportionally than that previously measured, but maybe not, perhaps there was less pressure on the heart. It was all a bit inconclusive. I'm not sure what we were expecting, and the size of lung is not indicative of survivability, there's a condition that causes super-sized lungs in unborn children and these aren't necessarily going to survive either. Saying that, getting a nice warm-fuzzy feeling that there were some lungs would have been nice. It's a mechanism for feeling that something is working, that you're doing (have done) the right thing.
Anything to be honest. Some form of hope without wanting to sound too melodramatic.
And that pretty much brings us up to date. We have fornightly scans, at week 34 the balloon comes out and at week 38, Mother gets induced and bean gets introduced to a whole bunch of scary people very quickly. We are meeting up with a hypno-birthing\midwife lady and going to NCT classes - these are partly because it is also a normal pregnancy with all the attendent risks and worries that that brings and it is very easy to forget that. We still need to know what's going to happen (or could happen) and understand all of that. We have also gone for an independent midwife. This is purely on the basis of having an extra pair of hands and some extra support: someone (else) who will be there for as long as we need them and the fact that they're medical means that Mother can relax. We are trying to create a supportive caring environment for the Mother in order to give the best chance to Bean
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