Yesterday afternoon was sh*t – apologies for swearing.
When you go into a meeting with four medical staff and it starts with “what was your understanding from our meeting on Monday?” and “what are your views on termination?” then you get the feeling it doesn’t bode well for what’s about to be said.
Our answers were that we understood our baby had a possible midline arachnoid cyst on his brain and, with regards to termination, it wasn’t something we wanted to consider unless the level of disability was going to be extreme/severe and would mean a very poor quality of life.
The conversation that followed has just left us feeling more confused/angry/upset but, most of all, still not knowing. Basically, our baby will definitely have some form of disability – but we’d prepared ourselves for that. In fact, we prepared ourselves to go there and be given information that would make us think it’d be crueller to give birth to Bump than keep him, and anything they said that suggested otherwise we would take as a positive.
We were told that where the cyst is (it is definitely what I’ve stated above), they just don’t see many babies with it. They therefore don’t have a huge amount of information to work with. It all just depends on how big the cyst grows and how the brain develops in the next few weeks. As it has been such a short space of time between discovering it and seeing the neurosurgeon, they have not been able to determine the rate at which the cyst is growing. It is also too early to tell to what degree it is effecting the growth of the brain. So we have to go back in just over two weeks to have another ultrasound, and possibly a further MRI after that.
The worst case scenario for our baby is that the cyst grows to an extent that the two sides of the brain are pushed so far apart it will not develop. Meaning he will not develop neurologically in any way – no seeing/hearing/moving around unaided – nothing. There is even a possibility of death not long after birth.
They can’t try to drain the cyst intrauterine because there is a large blood vessel that runs over the cyst and it would just be too dangerous.
Hopefully, Bump’s cyst won’t grow that rapidly and he’ll have some form of quality of life.
So at the moment we’re still in the “not knowing” stage and we hate it but we’ll get through it.
The staff at the hospital have been lovely. Matter of fact, but still lovely. I’m glad we have them monitoring Bump.