Thursday, 25 June 2009

Moving to London

We have finally sorted our move to London, we are flying over this Saturday 27th June. I am very anxious to get over now that I know we are going as I am petrified of going into labour before we make it over.
Mum has very kindly agreed to come with us and stay with us until I have the baby, I really appreciate her doing this as I don't think I could cope without her. I am sure it will be very hard for her to leave my dad behind and relocate to London. We have been very lucky and have got an apartment within a mile of the hospital. It looks lovely but I guess we will have to wait and see.

I was with my consultant today, it was quite emotional as I know the next time I see her will be for my postnatal check up and it will either be a very happy day as I walk in with my pram or a very sad day. I am really trying not to think about it.

The baby is now weighing 4lb 9oz, it really would be a bruiser if I went full term!! My fluid has increased to 33cm so I really don't see that happening, I am hoping I can hold out for another 2-3 weeks.

We are bringing a laptop so I will be able to keep this blog updated from London.

Sunday, 21 June 2009

Moving to London - 21 June 2009

After much deliberating we have finally reached the decision that we would be happier to deliver in Kings College.
Due to my impatient nature I was keen to go over as soon as possible just incase I went into labour. However, I rang Danielle (Catalinas replacement) who assured me that although I was high risk for premature labour my cervial length was good and that she did not think I would go into labour within the next few weeks. This was good to hear and we are looking at heading over on 6th July. The balloon is due to be removed on 16th July (34 weeks and 5 days) but I really do not see me getting that far. For once though I really hope I am wrong!

I have spent the last 2 days looking on the internet for somewhere to rent on a short term basis that is close to the hospital but not in a bad area. I know that may sound easy but it really has not been! Have picked the brains of a few people who know the area and I think we may be getting somewhere but you never know!

I just have to take it really easy and hope and pray that I can last another 2 weeks at least.

Good News from Kings - 18th June 2009

It is so nice to be posting some good news! They calculated the LHR and it has increased to 1.89! We are so delighted, it was so good to be hearing something positive. They are really pleased with the increase and they described this as one of the their better cases. They could also see some lung tissue which is also good news. However, we are aware that all of these measurements are smiply predictors and no-one can tell how the baby will be until birth. Just to know that we are no longer one of the extremely bad cases and that our baby has a decent chance of survival is good enough. We just have to take one day at a time and not worry too much about what is around the corner. For us this is the best possible news we could have received so we will live of it for a few days.

My fluid had increased to 29cm which is high and they are concerned about it. My cervical length was either 26mm or 29mm. This means it is starting to shorten but they said it is not of any concern until it is below 25mm, they decided not to drain. I am even more anxious now about my fluid levels and have to rest. Getting very bored lying on the settee all day every day but know it is for the best.

We also met with the neonatal nurse who was lovely. She talked to us in great detail about how the baby will be managed after birth. What machines they will use and how they determine when to do the operation to put the liver and bowels back into the abdomen. It was so nice to hear someone being positive and discussing our baby as if it will survive. We also toured the NICU, it was quite difficult to see all the babies hooked up to machines. However, Phillip and I have been very aware that our baby will be very sick and we know that if the baby is in NICU and doing ok then that is the best we can hope for.

We rented a car from the airport which was a good idea. As my fluid is increased I find it very difficult to walk any further than a few steps at a time without my stomach contracting. This was really good as Phillip pushed me in a wheelchair right to the car and I was able to be dropped at the hospital door. Much better than trains and tubes! There were a few Little Britian moments with the wheelchair though!

The devastating check up - 11th June 2009

Today the rollercoaster ride that people talk about with CDH babies continued. Up to this point we have been trying our best to stay positive, assuming that the balloon would work and that if I could get to at least 32 but ideally 34 weeks then the baby would have 50% chance of survival, which given our previous stats we would be delighted with.

On a positive note my fluid levels are still between 26cm and 28cm so no drainage needed (although still no cervical length taken).

Phillip started to discuss the option of us relocating to London to have the baby. Our consultant was pretty indifferent, but this appeared to prompt her to calculate the LHR. She was unsure of the formula but once she got it right she did the calculation and got 0.2!!!!!! This meant that it had decreased from 0.6 to 0.2. We were both absolutely devastated. I commented that it meant things had got worse and asked did she see any improvement in the lung? She said she did not.

This figure seemed very low so I called Catalina (our consultant at Kings) who said that she had never seen an LHR decrease and that she must have calculated it wrong. This settled my mind ever so slightly as I was confident she was wrong with the 0.2 but I couldnt help but think that as a qualified obstetrician she should be able to see lung growth on an ultrasound even if she cannot do the calculation. I was convinced that she hadnt wanted to say anthing but when we began talking about relocating she thought it was time to give us the news that the balloon wasnt working.

We are heading over to Kings College on Tuesday for a scan to confirm. If there has been a good improvement we will disucss delivering there. I am so so worried as I never explored the possibility that the balloon would not work, I suppose yet again this is your bodys way of coping. Now I am aware of just how likely it is they are going to tell us that the balloon is not working. I discussed with Phillip and we agreed that if that is the case then we have to accept that we have done everything we can and that all we can do is wait and see how the baby is at birth. However, we know we need a miracle.

Another checkup - 4th June 2009

28 weeks and 5 days. Not much to report from today except that fluid had only increased to 26cm which is really good. However, I am still very anxious as my consultant does not seem too concerned and she is hoping to not drain the fluid until I return to London at 34 weeks!! This is worrying me as they thought it may need drained weekly and also that they do not only measure the fluid level, they look at it in relation to cerival length. When I got the balloon in my cervix was 33mm, this is very good. With so much fluid the weight on my cervix is greater than it should be for 28 weeks, this tricks the body into thinking that the baby is larger and that I am closer to term. If it is getting to the point that my body thinks I approaching 40 weeks the cervix will shorten. It is therefore very important that the length of cervix is taken along with fluid level to make the decision to drain. I am finding it very frustrating that my consultant does not appear to think this is necessary.

I am also starting to get frustrated that I do not know if the balloon is working. It is very hard as I feel like we have gone so far and now we are relying on being monitored by someone who has no experience of the balloon or what it is likely to do. Whilst she is an excellent consultant there are very clear differences between the follow up received at Kings College. This is simply because they are seeing cases like ours on a day to day basis and decisions to drain fluid or assessing LHRs come as second nature.

We are also discussing the option of delivering the baby in Kings College Hospital for similar reasons to noted above. They are delivering all the babies that have had the balloon and they have a much more positive attitude to CDH cases than the team here.

Check up with consultant - 28th May 2009

Today we went for our first check up. Our consultant could see the balloon was still in place and she thought the lung looked a bit brighter. She also said that the heart position was clearer. She did not comment on whether or not she thought the lung had increased in size and we did not ask. I think at this stage I was afraid of the answer.

When they drained my fluid they drained it down to an AFI of 14cm (Normal levels during pregnancy are 5cm - 20cm). However, today it has increased to 22cm. I am worried about this as anything over 25cm is defined as polyhydromnios and once this is diagnosed it drastically increases chances of early labour. I am worried as this is a big increase in 9 days and if it continues at this level I will need it drained very regularly. On a positive note though it was thought that I may need it drained weekly so at least I have got through the first week.

I have also to go to Roya Maternityl tonight and again tomorrow night to get steriod injections. This is to help the babies lungs mature and is regularly given to those at high risk of premature labour.

FETO - Balloon is in!! 19th May 2009

What a day!! Today is the day we got the balloon in. The procedure is called FETO and I will try to describe what it is.
FETO involves inserting a 4mm balloon inside the babys trachea (windpipe) while the baby is still in the womb. Whilst inside the womb every baby produces lung fluid. The aim of the balloon is to block the windpipe so as the fluid is being produced against a pressure which inturn causes the lungs to grow. There can be many complications to this. Firstly, as the baby cannot swallow the amniotic fluid as easily, it can build up which can cause premature labour. Secondly, as they are going through the amniotic fluid for the operation it can cause a rupture which would lead to premature labour within 48hrs. Also, if the babys lungs are in a really bad way they may not have the potential for growth. Finally, it is possible for the balloon to become dislodged or burst. We decided that these risks are minimal if we look at the alternative to not having it done.

Thankfully, I was not aware of how painful the procedure would be! I had to give blood and get IV antibiotics beforehand which I was more worried about!
At the start of the procedure the professor had to turn the baby as it was lying breech, that was so painful! Then he had to put the baby to sleep by injection and prod my stomach numerous times until sleeping. True to form, my baby would not give up and kept on moving, I think it must be a very stubbornbaby, just like its mum! After what felt like 5 or 6 severe prods baby was finally asleep. I was then given a local anesthetic before a tube was placed in my stomach that would allow professor Nicolaides to put a camera down the tube and into the Uterus to the baby. He then used the camera to guide it into the babys mouth with the balloon following shortly behind. The balloon was carefully placed in the trachea where it was inflated. It is hard to believe that this procedure is actually microscopic and to appreciate how good the prof really is.
After that I had 600ml of fluid drained and an amnio was taken. This is a sample of fluid that is sent away to check for chromosome abnormalities, thankfully it came back clear.

If we lived closer we would be getting monitored after 2 days and again after 7 days to assess lung response to the balloon , as we live in Northern Ireland we will just have to wait and see what happens. At this time an appointment has been made for us to return on 9th July to have the balloon removed and we have been given detailed instructions for the team in Belfast regarding removal of the balloon at birth due to risk of premature labour being so high.

Catalina (our consultant at Kings) has also given us instructions to give to our consultant to calculate the Lung to head ratio (LHR) and she is going to monitor my fluid levels. At this stage it is anticipated that I may need my fluid drained as often as weekly. This is not good as every time they go into the uterus they are increasing the chance of early labour. Having said that, the risk of not draining is greater.

Meeting with Pediatrician - 14th May 2009

Today we met with one of the pediatricians at the Royal Hospital to discuss the balloon procedure. It is such a hard decision to make as there are risks associated with the procedure with premature reputure of membranes being the biggest risk. The longer the baby is in the womb the better the chances of survival as it will have so little lung function that prematurity will complicate drastically. It is imperative that I get to at least 32 weeks or the baby will have no chance of survival, balloon or no balloon.
Our consultant made it quite clear that she did not feel the balloon would work, she didnt appear to have much knowledge of the procedure but she did not see that it could improve lung function and she also felt that any intervention was highly likely to put me into premature labour following the procedure.
The pediatrician also expressed this view. He did not think that blocking the trachea of the baby could improve survival rates by this high percentage.

It was a very tough decision to make when many medical professionals have such differing opinions. Both our consultant and the Pediatrician did agree with the prognosis and felt that at best the baby had a 1-2% chance of survival, as the pediatrician put it: for the baby to survive we would need the same luck as rolling 6 on a dice 6 times in a row.
However, we were aware of at least a few babies with the same prognosis that survived after having FETO and felt we had to give the baby the best chance we possibly could, we could not rely on that luck.

We are heading back to London on Tuesday to get the balloon in.

Kings College Hospital - 12th May 2009

Today was not a good day. Phillip, mum, Chris and I went to Kings with the hope of finding out what was wrong with our baby. After a long wait we were seen by a sonographer who confirmed that it was indeed CDH. They assess the severity of the condition by calculating the LHR. This is a measurement that shows the lung volume of the babys "good" lung in relation to the head circumfrence. As the baby has abdominal contents occupying the right side of its chest they focus on the left lung and assume the baby has no lung function on the right hand side. However, due the the fact that the heart is now sitting where the left lung should be this affects the growth of the left lung.
From the vast amount of research I had done I knew that anything over 1.4 is good and the prognosis is good for these babies; between 1.0 and 1.4 is pretty touch and go; below 1.0 relates to a very poor prognosis with survival rates being less than 10%. We were told at this stage that they offer FETO (the balloon procedure) to those with a very poor prognosis ie LHR < 1 and liver hernitation.
When in a situation like that you seem to go into a coping mode and your mind convinces you that you will obviouly be one of the "good" cases, I think it is it the only way you get through it and without that hope your body would shut down. I was assuming this was the case and asked the consultant if the professor would be discussing this with us and if he would inform us if the LHR was less than 1 and if the liver was in the babys chest: I knew I was asking this but did not believe for one second it would be the case. When she abruptly answered that the LHR was 0.5 and that the liver had herniated I thought I was going to pass out. I have never experienced a feeling like that and hope I never have a moment like that again in life.
The consultant gave us a leaflet on FETO and we left to discuss this with mum and Chris before seeing prof Nicolaides an hour later to discuss. As you can imagine we were all over the place, I felt I couldnt even get my head clear enough to explain to mum and Chris what they had told us nevermind make such an important decision in an hour. In the back of my mind I was thinking that maybe they were all wrong and this really was not as bad as it seemed....then we met with the professor.

My opinion of someone has never changed so much. I now have so much respect for the man and think what he does is truely amazing, he genuinely cares and wants to save as many babies as he can that will otherwise not make it. This was not the case at our first meeting. He came into the room, told us our baby had a very severe diaphragmatic hernia and that we had 3 options:
a) terminate the pregnancy
b) continue with expectant management with the baby having 10% chance of survival, he said that he was giving is 10% but he was being kind it was really 1-2%.
c) go for the FETO surgery which would increase the babys chances of survival drastically.

He gave us the option of having the surgery done that day and although now it seems like there wasnt really a decision to be made when you have been hit with such awful news your brain does not function properly. I felt certain he must be wrong and never wanted to see him or that hospital again.

We declined the surgey that day and left London with the most stressful week of our lives ahead of us.

Diagnosis Day - 7th May 2009

We had a scan today and we were told the devastating news that there appears to be some of the abdominal contents in the thorax where the lungs should be growning and that this is keeping with the appearance of a right-sided congenital diaphragmatic hernia (CDH). This occurs when the diaphragm does not form properly and the abdominal organs such as stomach, liver, bowels, spleen etc can slip through the hole and into the chest where the lungs should be growing. At this stage it looked like only bowels had slipped through. I felt like I had been hit over the head with a brick as I had been reading up on CDH and knew just how serious it was, this was the one diagnosis I really did not want to hear.

During the week I had been reading up on Prof Kypros Nicolaides who is an expert in fetal medicine. I knew he specialised in fetal medicine and diagnosis. Our consultant was still not 100% sure it was cdh and when I mentioned going to see prof Nicolaides for a second opinion she didnt think it could do any harm. She emphasised that she really was not sure, that she was certainly not prof Nicolaides and if he diagnosed something else she would not be surprised.

After speaking with his team we are heading over there next week to confirm.

Fetal Echo - 23rd April 2009

The past week has possible been one of the longest of my life. Today we went for a fetal Echo which is a detailed scan of the babys heart. Thankfully we were given good news and the heart is working perfectly although the position has shifted. We are so glad as we know bad news regarding the heart would been devastating.

Finding Out - 16th April 2009

Today we went for the second part of our anomoly scan with the hope that everything would be ok. We were devastated to hear that the babys heart was in the wrong place, it was displaced to the left. At this stage it was not clear what was causing the heart to shift and our consultant discussed 3 possible reasons: CCAM, teratoma or Right-Sided Congenital Diaphragmatic Hernia (CDH). However, she felt it was less likely to be CDH as 90% of cases are left-sided and it is usually associated with other anomolies and it looked like our baby was perfect otherwise.
We went home and researched the internet and CCAM seemed the most likely diagnosis so as you can imagine I read almost every article ever written on CCAM and figured that although I was devastated, the prognosis was very good so I started to calm down a little.