Scans and Other Things
Tuesdays Taunton scan - that I missed - went fine. It's a little difficult for them in that they've had little involvement so far so for them to make any judgement on whether things are better or worse is unfair. On the plus side, amniotic fluid is as to be expected (high but no higher than its otherwise been) and Bean has at last decided to face the right way. Currently he's about 4 and a quarter pounds.
On the downside, the girl who had the tracheal plugging the same day we had and who was going to have the balloon out the same time as us went into labour at 33 weeks and lost her baby. Very sad doesn't really cover it.
The internet is a dangerous thing
As if we didn't already know! The joy of the internet is that there is a vast quantity of information now available to whoever. The downside is that when you find it, reading it might be a mistake!
Another blog following a CDH baby (who at the age of 2 and a bit re-herniated. Eeek! Thankfully doing fine now). This blog can be found here . On this blog there are links to numerous studies on the expected outcome of CDH babies depending whether they are left or right herniated and whether the liver is in the chest cavity or not. These are interesting but of less value to us as we know where we are in terms of expected outcomes. There is, however, a paper on the health prospects of bean once the immediate problem (they're breathing!) is fixed. That can be found here. It's not terribly cheery reading. Just hope that along with the inherited stubborness and sheer bloody-mindedness of the Mother he inherits the lung function and the health characteristics from me.
Allowed out to play ...
Away for a long weekend with the usual crowd. To France. Not entirely convinced whether this is a sensible thing to do now. Oh well, it's probably a good thing that we spend a little time apart! Eurostar can get me back to Taunton in under 7hrs if needs be (at great expense, but...). However the Mother has assured me that nothing will happen before the 7th. Her mother is coming to stay for the weekend so at least there will be someone in the house.
Being the bad husband that I am, whilst I am away I will be missing another scan. This is another Taunton trip. Hopefully at this scan there will be nothing un-toward and a lovely set of lungs. It was decided that there was no need to go to Bristol again before the balloon comes out (7th Feb) as we will be in Bristol the following week (yay Valentines Day in hospital! - on the plus side there are lovely places to eat in Bristol).
Friday, 27 January 2012
Sunday, 22 January 2012
Week 31: 19th to 26th Jan 2012
Aww bless!
Just received the parent support pack from CDH UK. Very sweet and lovely containing simple things like a fleece blanket for bean, notepad and pen, telephone card amongst others. Somewhere (altho' can't find it at the moment - it might be on their facebook page - oh yes, so it is! ) they have a new appeal - Tiny Socks 4 Tiny Toes. One of the items they would like to include within the packs are a pair of little socks. The reason for this is ...
"CDH babies usually receive minimal stimulation to begin with, and are unable to be dressed because of this and all of the tubes and wires that are attached to their little bodies. Doing things like stroking and lightly kissing them, talking & singing gently to them helps greatly. Other things like changing baby's nappy and other little cares that the nurses can help you with (and providing it's okay) help too.
Putting little socks on baby's feet is one way of helping parents to feel like they are looking after their baby in the absence of being able to dress their baby, as their tiny toes can get cold with being immobile and especially if they are in an open type cot." ( taken verbatim from here )
Wednesday's Thought
(well, hopefully not the only one, I've got quite a bit of work to do).
What is the ettiquette\rules\instructions for driving in conditions of a medical emergency? Flashing lights and hazards... or just damn quickly and hope that the police don't catch up until you've reached the hospital? Not sure Mother would be happy going down the M5 on the back of the motorbike whilst in labour. That might lose me brownie points. But that would by far be the quickest method...
Tuesday - NCT Class ( my last)
Lots on feeding and problems of feeding (so what problems might you expect breast-feeding... well, the fact that bean is intubated and in an incubator might be a minor issue!). The issues of Day 3 were also addressed and that was useful.
It turns out that this will be my last as I'm in London tomorrow so missing the breast-feeding session and I'm in France the following Tuesday and the very last one we'll be in London following a - hopefully - successful balloon removal operation. I think that in better circumstances I would have enjoyed the sessions more. I did find them useful and they were a lovely bunch of people and wish them the very best of luck.
Weekend - So why have I come to need to move house now?!
Yes, finally the time has come where I need to shift all the rubbish from where I was living to where I'm currently living. Except, there's no room as we haven't built the extension yet. Or even got the quotes in from the builders. Oops. Where's the nearest storage facility?!
Still a house to clear and sort. Still my brother has a far worse job. Much more stuff. But it's so time consuming to sort stuff out. Why do people put themselves throught it?!
Just received the parent support pack from CDH UK. Very sweet and lovely containing simple things like a fleece blanket for bean, notepad and pen, telephone card amongst others. Somewhere (altho' can't find it at the moment - it might be on their facebook page - oh yes, so it is! ) they have a new appeal - Tiny Socks 4 Tiny Toes. One of the items they would like to include within the packs are a pair of little socks. The reason for this is ...
"CDH babies usually receive minimal stimulation to begin with, and are unable to be dressed because of this and all of the tubes and wires that are attached to their little bodies. Doing things like stroking and lightly kissing them, talking & singing gently to them helps greatly. Other things like changing baby's nappy and other little cares that the nurses can help you with (and providing it's okay) help too.
Putting little socks on baby's feet is one way of helping parents to feel like they are looking after their baby in the absence of being able to dress their baby, as their tiny toes can get cold with being immobile and especially if they are in an open type cot." ( taken verbatim from here )
Wednesday's Thought
(well, hopefully not the only one, I've got quite a bit of work to do).
What is the ettiquette\rules\instructions for driving in conditions of a medical emergency? Flashing lights and hazards... or just damn quickly and hope that the police don't catch up until you've reached the hospital? Not sure Mother would be happy going down the M5 on the back of the motorbike whilst in labour. That might lose me brownie points. But that would by far be the quickest method...
Tuesday - NCT Class ( my last)
Lots on feeding and problems of feeding (so what problems might you expect breast-feeding... well, the fact that bean is intubated and in an incubator might be a minor issue!). The issues of Day 3 were also addressed and that was useful.
It turns out that this will be my last as I'm in London tomorrow so missing the breast-feeding session and I'm in France the following Tuesday and the very last one we'll be in London following a - hopefully - successful balloon removal operation. I think that in better circumstances I would have enjoyed the sessions more. I did find them useful and they were a lovely bunch of people and wish them the very best of luck.
Weekend - So why have I come to need to move house now?!
Yes, finally the time has come where I need to shift all the rubbish from where I was living to where I'm currently living. Except, there's no room as we haven't built the extension yet. Or even got the quotes in from the builders. Oops. Where's the nearest storage facility?!
Still a house to clear and sort. Still my brother has a far worse job. Much more stuff. But it's so time consuming to sort stuff out. Why do people put themselves throught it?!
Thursday, 19 January 2012
Week 30: 12th to 18th Jan 2012
Thursday - well everyone else is scanning so we want to as well!
Mother is getting scanned again today (I'm in Bristol starting the great house-sorting exercise). This time in Taunton so that they are up to date with what is going on. The plan is still that should Mother be early, I'm breaking the Taunton to Bristol landspeed record. Even if it is in a diesel Focus estate. Which reminds me, it needs new tyres and I must remember to keep it full of fuel!
Wednesday - time for the fortnightly scan
Good news. Apparently. The prof is a consumate optimist, but he seemed pleased with the progress that bean is making. There appears to be the sort of progress\development that you would expect that the balloon would make. There is less pressure on the heart which can only be attributed due to an increase in pressure\volume of the lungs. Obviously there are large caveats associated with that, but things are going in the right direction. Bean is growing well and that in itself is a good sign as if there were additional problems then a small baby would be more likely.
We also saw the birthing suite. The rooms for the induced are much less fun than for the "natural births" (but fine).
Tuesday - that means it's Obstetrics
Meeting in Bristol with the Obstetrics consultant and a chance to look around the Neonatal ITU. It was less scary than expected although it was interesting to know what to expect when the time comes and to be less phased out by what we may see and\or occur. It's still going to be horrible. We also learnt a little more about the what, where's and how of what will happen when Beanie makes an appearance along with the whole induction procedure and the logistics of that ( I'm sleeping on the street apparently.... )
I'm not sure how much was new information but it was useful to have the descriptions in the place where they will happen.
Later on in the afternoon we meet up with the independent midwife. She's lovely (did I need to say that??) and she'll provide support to Julie and also undertake all the duties that the community midwife would do if we could get to her (the community midwife only works on a Wednesday morning which is when we're in Bristol). All the consultants and doctors that we have spoken to have all agreed that having one is a very good idea as up 'til now all the focus has been on Bean and less on the Mother. This will provide continuity of care. She'll be there throughout the labour and birth and also provides support afterwords for as long as we need it. Certainly an extra pair of hands will be useful especially when Bean is born so that I'm not forced to decide between heading off to ITU with Bean or staying with the Mother (phew!).
NCT class was all about labour positions. Interesting, but it's quite hard not to say something out of order given that Mother will be either induced or it'll be a C-section. No real choice. We are not wanting to say anything to any of the other people there as it's not fair on them. And we also want to retain a sense of normality. Especially given the amount of kicking that bean seems to be giving Mother. He does like Dr. Suess though.
Mother is getting scanned again today (I'm in Bristol starting the great house-sorting exercise). This time in Taunton so that they are up to date with what is going on. The plan is still that should Mother be early, I'm breaking the Taunton to Bristol landspeed record. Even if it is in a diesel Focus estate. Which reminds me, it needs new tyres and I must remember to keep it full of fuel!
Wednesday - time for the fortnightly scan
Good news. Apparently. The prof is a consumate optimist, but he seemed pleased with the progress that bean is making. There appears to be the sort of progress\development that you would expect that the balloon would make. There is less pressure on the heart which can only be attributed due to an increase in pressure\volume of the lungs. Obviously there are large caveats associated with that, but things are going in the right direction. Bean is growing well and that in itself is a good sign as if there were additional problems then a small baby would be more likely.
We also saw the birthing suite. The rooms for the induced are much less fun than for the "natural births" (but fine).
Tuesday - that means it's Obstetrics
Meeting in Bristol with the Obstetrics consultant and a chance to look around the Neonatal ITU. It was less scary than expected although it was interesting to know what to expect when the time comes and to be less phased out by what we may see and\or occur. It's still going to be horrible. We also learnt a little more about the what, where's and how of what will happen when Beanie makes an appearance along with the whole induction procedure and the logistics of that ( I'm sleeping on the street apparently.... )
I'm not sure how much was new information but it was useful to have the descriptions in the place where they will happen.
Later on in the afternoon we meet up with the independent midwife. She's lovely (did I need to say that??) and she'll provide support to Julie and also undertake all the duties that the community midwife would do if we could get to her (the community midwife only works on a Wednesday morning which is when we're in Bristol). All the consultants and doctors that we have spoken to have all agreed that having one is a very good idea as up 'til now all the focus has been on Bean and less on the Mother. This will provide continuity of care. She'll be there throughout the labour and birth and also provides support afterwords for as long as we need it. Certainly an extra pair of hands will be useful especially when Bean is born so that I'm not forced to decide between heading off to ITU with Bean or staying with the Mother (phew!).
NCT class was all about labour positions. Interesting, but it's quite hard not to say something out of order given that Mother will be either induced or it'll be a C-section. No real choice. We are not wanting to say anything to any of the other people there as it's not fair on them. And we also want to retain a sense of normality. Especially given the amount of kicking that bean seems to be giving Mother. He does like Dr. Suess though.
Wednesday, 11 January 2012
Week 29: 5th - 11th Jan 2012
Our First NCT Class
It's quite easy to forget that normal pregnancy things are also going on and so off we go to an NCT class to learn about all the pregnancy things that we need to know like norrmal parents. Or something! Quite a lot of giggling about the stages of giving birth and guessing when the neo-natologists would start injecting, there was also some overlap with the hypno-birthing\relaxation meetings that we are doing.
It will be useful and ensures that we don't forget what's going on.
Visualisation Techniques For Relaxing...
"Imagine you are on an island, you are standing on a large hill in the centre of the island, you are surrounded by grassy fields. Below this you can see trees and jungle stretching down to beaches and a deep blue sea. The grass is long and you can see it sway gently in the breeze. There is a path flowing gently down the hill into the forest..."
yippee!! singletrack :) We've found the holey trail! This path is clearly going to be the best of the best descent you've ever done. And you are going to nail it perfectly.
"... you walk slowly down the hill..."
Walk?! sod that I'm imagining riding the best bits of every downhill i've ever done. And this time riding them properly!
Apparently going "whoop" in the middle of a hypno-birthing session is considered bad form. Not very relaxing by all accounts. Oh well.
It's quite easy to forget that normal pregnancy things are also going on and so off we go to an NCT class to learn about all the pregnancy things that we need to know like norrmal parents. Or something! Quite a lot of giggling about the stages of giving birth and guessing when the neo-natologists would start injecting, there was also some overlap with the hypno-birthing\relaxation meetings that we are doing.
It will be useful and ensures that we don't forget what's going on.
Visualisation Techniques For Relaxing...
"Imagine you are on an island, you are standing on a large hill in the centre of the island, you are surrounded by grassy fields. Below this you can see trees and jungle stretching down to beaches and a deep blue sea. The grass is long and you can see it sway gently in the breeze. There is a path flowing gently down the hill into the forest..."
yippee!! singletrack :) We've found the holey trail! This path is clearly going to be the best of the best descent you've ever done. And you are going to nail it perfectly.
"... you walk slowly down the hill..."
Walk?! sod that I'm imagining riding the best bits of every downhill i've ever done. And this time riding them properly!
Apparently going "whoop" in the middle of a hypno-birthing session is considered bad form. Not very relaxing by all accounts. Oh well.
Monday, 2 January 2012
Why Blog
I am writing this blog for two reasons: one is simply the need for an element of cartharsism the other is to provide as much information of what is going to as many of family and friends as possible.
Thankyou for reading
Thankyou for reading
What is CDH (Congenital Diaphragmatic Hernia)?
Congenital Diaphragmatic Hernia (CDH) is a condition that affects 1 in 2500 to 4000 babies per year. It is where the diaphragm has not developed properly or has torn - potentially allowing the guts (well, some of them) into the chest cavity.
The hole in the diaphragm whilst the cause of the problem is not the issue. CDH principally leads to under-development of the lungs - pulmonary hypoplasia. Whilst in the womb, the lack of lungs isn't really a problem as all nutrients, oxygen etc. are provided for through the umbilical cord. Once outside, the lack of lungs quickly becomes a problem and depending on how badly affected the baby has been, the lungs may not be able to support life. The hole can start as early as 8 weeks and CDH may also be indicative of other congenital problems. The hole can be sufficiently small so as to escape detection until birth or so massive that there is essentially no diaphragm. It is not necessarily the case that the smaller the hole the better the prognosis; outcome is more dependent on the amount of abdominal contents in the chest cavity. It should also be stated that poor prognosis sometimes do well and good prognosis do badly.
On the basis that the lungs are sufficiently able to support life, then once the baby has stabilised and is strong enough, the diapragm is repaired or replaced. After which, it's pretty much all systems go. Yes, there are additional complications with a CDH baby (problems of feeding, reflux, bizarrely their hearing is a bit screwed too), but that's it. The baby should develop normally - albeit slowly due to the limited lung function, and he'll have amazing scars. Ok so they're never going to be the next Mark Cavendish, but there's no reason why they couldn't be the next Steve McClure.
More details can be found here, This link will take you to the site of an EU trial that aims to determine whether FETO (a balloon inserted in-utero into the trachea which is what we have done) increases the survival rate. A small study in South America shows that the likelihood of survival jumps from below 10% to about 50% with FETO in cases of severe pulmonary-hypoplasia (that'll be us then).
There are numerous baby charities, the CDH one can be found here and they also have a public facebook page
The hole in the diaphragm whilst the cause of the problem is not the issue. CDH principally leads to under-development of the lungs - pulmonary hypoplasia. Whilst in the womb, the lack of lungs isn't really a problem as all nutrients, oxygen etc. are provided for through the umbilical cord. Once outside, the lack of lungs quickly becomes a problem and depending on how badly affected the baby has been, the lungs may not be able to support life. The hole can start as early as 8 weeks and CDH may also be indicative of other congenital problems. The hole can be sufficiently small so as to escape detection until birth or so massive that there is essentially no diaphragm. It is not necessarily the case that the smaller the hole the better the prognosis; outcome is more dependent on the amount of abdominal contents in the chest cavity. It should also be stated that poor prognosis sometimes do well and good prognosis do badly.
On the basis that the lungs are sufficiently able to support life, then once the baby has stabilised and is strong enough, the diapragm is repaired or replaced. After which, it's pretty much all systems go. Yes, there are additional complications with a CDH baby (problems of feeding, reflux, bizarrely their hearing is a bit screwed too), but that's it. The baby should develop normally - albeit slowly due to the limited lung function, and he'll have amazing scars. Ok so they're never going to be the next Mark Cavendish, but there's no reason why they couldn't be the next Steve McClure.
More details can be found here, This link will take you to the site of an EU trial that aims to determine whether FETO (a balloon inserted in-utero into the trachea which is what we have done) increases the survival rate. A small study in South America shows that the likelihood of survival jumps from below 10% to about 50% with FETO in cases of severe pulmonary-hypoplasia (that'll be us then).
There are numerous baby charities, the CDH one can be found here and they also have a public facebook page
The Story So Far
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
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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