The story so far

Baby brussels problems first began when we went for the 20 weeks scan on the 12th Apr 06.  After the initial scan began the sonographer said that brussel is a boy.  However, after much scanning around we were told that she had "serious concerns" regarding brussel.  We were told the they believed that he had a diaphragmatic hernia, this meant that the diaphram had not formed properly and the stomach was up in his chest.  This was causing problems for his lung development as the space required for his lungs to grow was being taken by his stomach.  We were told that we needed to see the consultant at Nottingham City hospital but due to the easter weekend we could not meet with them for a week.  Both Julie and myself were absolutly detraght and scared by this, we did not know what this illness was or what it meant for our unborn child. After we returned home the first thing we did was to do some research on the internet as to this condition.  It was both surprising and disturbing how little information was available on this condition.  We found that there was next to no information available within the UK and most information was centred in the US.  What we did find was that statistically our baby has only a 50% chance of survival and if he should survive he would need to endure one, maybe two operations to repair the diaphram.  You cannot begin to imagine the impact that this had upon us, the only thing I can compare it too is someone taking a sledgehammer to the side of your head; you search desparately for a handle on the moment but there is nothing to grasp on for support. For the next week we both spend our time wandering around in almost a dreamlike state not really knowing what to think, believe or evan dare to hope.  With each day that passed the meer though of what was happening just brought me to tears, it took days before I was able to bring my emotion under control sufficiently to actually discuss what was happening. On the 19th Apr 06 we went to Nottingham City Hospital to see the consultant.  She began by scanning brussel to see what was happening, she told us that was the sonographer had said was correct and brussel had got a diaphragmatic hernia.  We were given time to prepare so questions so that she could help us to understand better what the condition is and how it will be treated.  She told us that the figure of 50/50 survival rate was not strictly speaking correct and in fact it was better than that as that figure includes those babies who did not survive the birth, were terminated due to other defects etc.  She also told us about a new treatment that was being pioneered in London in which a balloon is inserted into the baby's windpipe and inflated blocking the windpipe.  This means that the fluid that develops in the lungs, instead of draining will fill the lungs and help the to force the stomach out of the way so they can develop better.  We asked to be put forward for this treatment so that brussel could have the best possible chance. Over the next week we actually began to dare to hope that our baby had some hope for the future and that things were not a bleak as the information on the internet would have us believe.  While we were still desparately aware of the seriousness of the condition we felt what we had been told gave hope for brussel.  On Friday 21st Apr 06 Julie rang Kings College Hospital in London to see when the professor could see us to see if brussel is eligable, she was told that it would be a private treatment if she had not been referred by our GP.  Shocked by this we called Nottingham City Hospital who said they would fax over the paperwork and Kings College would be in contact.  On Monday 24th Apr 06 Kings College Hospital contacted Julie and said they wanted to see us on Tuesday morning and could we be there for 9am.  So of we went at 6:30 in the morning, London bound hoping to find good news there.  After a marathon journey which lasted almost 7hours after being caught in traffic following an accident (averaging 21mph!!) we finally arrived at the hospital at 1pm.  We then waited a further 2:30 hours before seeing the professor.  He began the scan overseen by around 10 student doctors as the condition was rare it seemed that we had become the feature attraction of the day.  He scanned our little brussel then turned and hit us with more bad news.  He told us that in this condition it has always been a 50/50 survival rate but they had now applied a little more science to this.  This was done by checking the lung to head size ratio and then they are able to place the "survival rate" on a varying scale, our little brussels lung ratio is 0.7 this put him with a survival rate of 10%.  Our whole world fell before us, we both sat completely dumb-founded but what had jusy happened.  We had come here being told that things weren't that bad only to be now told that they were about as bad as they would get.  He continued that we had three options; terminate the baby, continue and hope for the best or take the balloon treatment as brussel was eligable.  Taking the balloon treatment should increase his chances to 50% but it will also increase the chance of being premature because of the invasive nature of the treatment.  He then asked if we had any questions…. we could bearly grasp what had just happened.  This is something that you read about, that happens to someone else yet here we are being told that our baby is critically ill and needs some new treatment if he is to have a chance to survive. We were told that we should go off for a coffee so that we could think about what we wanted to do and to prepare any questions that we had. As far as we were concerned there was no real choice to be made on our part.  We already knew that "structurally" there was nothing else wrong with brussel, he does not have down syndrome or any of the other chromosone problems and based on this, termination was not an option.  We could not do nothing and hope for the best as with only a 10% chance he doesn't stand any real chance.  So we have to take the treatment, after returning back to the room we are told that we will need to be in the hospital for two nights.  Because of the low capacity of brussel's lungs they want to operate as soon as possible so we are told they want to do the operation on the 2nd May.  After the professor left his assistant then told us that based on this date we would need to there on Monday 1st May 06 in the afternoon for tests; they would operate on the 2nd May and should be out by Friday 6th May 06 (little different to 2 nights!).  He also told us that there is currently a documentry being done about the professors work in our baby's condition and they would like to know if we would like to take part.  This would involve the film crew being present during the procedure and they also want to have a "diary" of our feelings, thoughts, fears and hopes throughout the pregnancy.  We were asked to think about it as they did not need an answer there and then.  We finally arrived home at 10pm some 15 1/2 hours after leaving home, we felt emotionally and physically drained. We are now waiting to hear if the operation will be taking place on Tuesday or not.  Both of us do not know what to dare to hope, we just want our baby to come out of this a happy healthy boy.  The support that has been offered by friends, family and evan clients (as i'm self employeed) is amazing, most people don't know what to say when you tell them and to be fair if the boot was on the other foot I would not know what to say.  I have been keeping myself busy with work and trying no to think about this as when I do the tears start to roll, as I write this now my eye are welling up at the thought of what lies ahead for Julie & myself and more importantly bab
y brussel.  Right now I just have to hope that what lies ahead we have the strength to deal with.