Written @ 15:26
“Do not Google it!” were my instructions upon leaving the hospital on Monday, after finding out that our unborn baby had a possible arachnoid cyst on his brain that would require surgery when born. I didn’t want to hear any horror stories. I just wanted to have at least some, maybe unrealistic, thought that our baby would be ok.
The first thing I did when we got home, and my partner had left the room, was to Google it. I didn’t find anything helpful. Last night when I was awake (again), I tried finding out more info. Nothing was very user friendly so I had the idea that I needed to do something positive with what, at the moment, is a pretty difficult time. I thought that starting a blog might help other people that were going through the same thing but, like me, couldn’t find anything that was just user friendly. So here it is, my first post……..
On Friday we went for our routine 20 week scan. The lady that performed the scan was very nice, but literally didn’t say anything as she was doing it. The longer the scan lasted, the more I could sense something was wrong. I’d said at the beginning that we wanted to know what sex it was.
After 15+ minutes of her doing the scan, another lady coming in during the scan (maybe coincidental), neither of them saying a word and not telling us the sex of the baby, she put the scanner thing down and said she’d noticed a small problem with the baby’s brain. I immediately started crying. They told us to try not to worry, it was some fluid they think they’d seen but that it was very subtle. They said they would get me an appointment with the consultant who would be able to do a more thorough exam/scan and it could turn out that he was happy with everything. They just wanted to be sure. I asked if it was a boy or a girl, and they said it was a boy and asked if we wanted to see him. She put the scanner on me again and showed us the screen then printed us off some pictures.
We were then put in another room and waited for what seemed like ages. A consultant (I don’t know what she was a consultant in) came into the room with a very grim face. She confirmed there was a problem with the scan and that they were going to refer me to a different hospital instead of waiting for the other consultant at their hospital, who was away for a week. She did little to reassure us, if anything she made us feel worse, she wouldn’t commit to answering any of our questions (I understand that she didn’t want to say anything that could be incorrect). She basically said they would scan me at the other hospital and go through our “options”. Any other question we asked was just met with “I can’t really comment on that.” I still don’t understand why she came into the room.
My partner and I both left the hospital very upset. Not long after we got home, we had a phone call from the hospital to say they’d got us an appointment for Monday. It was going to be the longest weekend, but better than waiting over a week like we’d have to at our original hospital.
On Monday we went to the hospital for our scan. We were seen by a doctor from Spain who was over for a couple of months. She scanned me for about 10 minutes and then the professor came in. He looked at the scan for about 30 seconds and knew immediately what it was, though I didn’t understand the medical terminology he was using. The only words I heard were “it’s normal” and I thought everything was ok.
They finished scanning and sat us down to talk. He explained there was no liquid on the brain but that there was a large cyst which was pushing the ventricles apart and would require brain surgery when the baby was born. He could not comment on what effect it would have on the baby and said we would need to have another consultation with him and the paediatric neurosurgeon. She would explain the possible outcomes and that we would also have the option to terminate if we felt we could not cope. They arranged for an urgent MRI scan at the children’s hospital and then an appointment to come back for the consultation on the Thursday.
We got the impression that the cyst might not be as bad as the initial thought of fluid on the brain or bleeding but we still didn’t know what to think. We did decide though that as long as our baby has some quality of life then there is no way that we are going to terminate the pregnancy. We had said at the start of the pregnancy that we didn’t want any of the Down’s screening or anything like that because we didn’t care, we’d love our baby no matter what. That is the view we still hold. I don’t know if that will change though if we’re told he’ll have an appalling quality of life. I can’t make up my mind whether its crueller to put him through it or more selfish of us to not.
So this is where we are sat now, in the children’s hospital cafe waiting to go and have our MRI scan. Still feeling like we don’t really know anything.