Well this is how the appointment went with the Neurologists:-
We arrived there and were seated and then moved to a room where we could see the scan pictures that were taken yesterday. The nice lady that I like, who at first gave us some hope (although she never promised anything) appeared with another lady who I had not met before but seemed nice enough. We started going through the scan pictures and she showed me where the lining had increased. She explained it like it was a balloon and that on the MRI it was deflated slightly indicating that it was ok'ish but that at yesterdays scan it was now round and inflated indicating addition pressure due to increased fluid. This is not good and will definately get worse. Some weeks it may increase more than other weeks and nobody knows what will happen but it won't stop.
These are the scenarios I asked them about:-
To be brought out at 24 weeks - They are not going to resussitate her UNLESS i went into natural early child birth when they would try.
To be brought out at 28 weeks - She will be weak and her lungs (even if given steroid injections) will be weak and will probably experience breathing problems of some kind, asthema, etc. She is not a normal premature baby, her brain is very very fragile at this stage, her organs as well but on top of that she has Hydrocephalus bad. Her head would have to be drained either inside me before a natural birth or before a C- Section, both putting me at risk and her as well. To expect her to live through the premature birth and Hydro is not even barely thought about in the hospital. She would spend months in hospital probably fighting infections. She could aquire Cerebal Palsy, hearing problems, breathing problems, bleeding to the brain (although they said small bleeds were not a problem) which could cause further brain damage on top of the Hydrocephalus problem. That 1 + 1 problem is more than two as far as they know. They said we have to realise she is not just premature, she has much more to contend with than that which is bad enough, she has Hydro as well, badly and she is very sick.
To wait and see how things progress with the Hydro - Yes we can continue the pregnancy but the fluid will increase and the head, we may leave it until 34 weeks for example but the hospital will not guarantee that they will bring her out at 34 weeks. Her Hydro might be considered so bad (damage to brain) that they will not force her through labour being so poorly and therefore I will have to continue the We will then be over the cut off for a termination and HAVE to continue the pregnancy and care for a severely brain damaged child (which is what they anticipate will happen although they cannot say for 100%)
We will never be able to decide ourselves when they can take her out... it will be the decision of the doctors, if and when they want to or are going to. If they decide for one reason or another that they are not going to take her out then thats thats... its a lottery. They said if left until 34 weeks the prognosis would not be good.... full term = forget it, we are just basically asking for trouble (my words not theirs)
To take her to full term would mean her head would be too big to give birth to her naturally and therefore we would have to have a C-Section. Since the head would be so big and even though its a C-Section it would cause pressure on my uterus and difficulties getting her out and may scar the uterus doing so meaning I may not be able to have kids again if the damage was severe. By then the chances of her being severely mentally handicapped are 85 - 90% certainty. There is a 10% chance that she would not be affected much (and they can't guarantee that really)
I asked in their opinion if it was THEM what would they do?
Lady No.1 said (or should i say bailed herself out replying with) "My husband says I am a different person when I am pregnant so I don't know what I would do, it would be impossible for me to say (pre-rehearsed many times i presume but hey who can blame her)
Dr Peters said: I have to ask myself the question looking at the results and prognosis "Could I/Would I want to care for a severely mentally handicapped child who might be dependant on me for the rest of their lives. Have trouble finding work, getting a girlfriend, living independantly?" Do I want to take the chance that this will probably happen? I suppose my answer is no to this question.
I asked her if we could bring her out soon, put her on life support and then after the birth check for brain damage with an MRI scan, if there was damage could we selectively ask to take her off with dignity and let her go so she would be subject to a life of mental disability - She said that could not be guaranteed and that is say at 34 weeks she was breathing independantly then the doctors would not let her die, brain damaged or not, we would have made that decision to keep her alive no matter what, even if she was non functional and we would have to care for her like that. No guarantees.
So thats quashed every option we have.... its a no win, no win situation unless we want to take the chance of having a severely handically, mentally brain damaged child at the odds of 85-90%. I know the doctors have been wrong before, I have read 100's of fantastic success stories but what about the unsuccessful stories? Maybe those children are so brain damaged they can't come on a forum or even type. Maybe their parents don't want to share their doom and gloom and upset themselves to tell their story. Maybe if they had their time again (like our next door neighbour with their severely brain damaged child) they would have chosen different options. I can't take that chance.
What a horrible and selfless decision you've had to make.
