Sitting outside the John Radcliffe in the sun prior to our 20-week scan on Thursday we were anticipating that the hardest bit of the appointment would be saying "we don't want to know the gender." Fortunately, we managed to achieve that little sentence just fine and the scan proceeded just as expected. Nice little outline of Baby A to which we went "aww..." Some considerable time examining each physical feature (this didn't worry us, we'd been led to expect it would take a while.)And then the moment when our 'perfect' sick-free pregnancy veered off one way, and reality the next, with the words; "there's something I'm meant to measure, but I can't see it."
Hmm... Anyway, the sonographer said that the failure to see whatever it is was associated with spina bifida, then rushed off to see if a consultant was available to give a second opinion, leaving Mr A and myself looking at each other saying "well, we've heard of spina bifida, but what is it?"
Anyway, after about 10 minutes the sonographer returned and took us up to floor 6 of the JR and sat us in what might be rightly termed a 'bad news room' because it was small with sofas and nice pictures on the wall. Presently we were whisked to another scan room where a very pleasant consultant gave Baby A another once-over and agreed with the sonographer's opinion. She took some pics and showed them to another consultant, who concurred.
So they'd observed a lemon-shaped head, banana-shaped cerebellum and a gap at the bottom of the spine which may or may not be covered with a membrane. These things point to spina bifida. Also a little fluid on the brain which is borderline but may mean hydrocephalus which is commonly associated with SB. For now, they just wanted us to confirm that we'd understood the headlines - severe physical disabilities, probable incontinence, probable learning difficulties of an unquantifiable severity, the option of continuation or termination. Not quite what we had been expecting a couple of hours before.
Well we were obviously shaken. But it was amazing how little time it took us to cheer up. I'm sure most couples have had that chat about 'in what circumstance would we choose to abort?' and we'd always agreed that any chance of the baby living a reasonably happy life is worth a shot. So our only option is to continue with the pregnancy and just pray for the best. We've done a heck of a lot of research in the last few days and have found that outcomes for people with these disabilities vary greatly - there certainly seem to be a lot who manage to live a very fulfilled life. Dame Tannie Grey-Thompson and many other elite paralympic athletes have these conditions.
Our whole outlook on pregnancy has changed in the last few days. Whereas before we were keen not to know the gender, we now hope to find out at the next scan, if only to be able to refer to Baby A as a 'little boy' or a 'little girl' and not 'a poor sick child.' Although we're yet to talk to the hospital about practicalities, a planned cesarean-section before the due date seems pretty likely. Certainly there will need to be a lot of forward-planning as Baby A will need surgery on his/her spinal cord soon after the birth as well as, most probably, a shunt fitted in his/her head to drain the fluid.
You'd have thought we'd be wallowing in sadness, but strangely we're not. The kind words of others have helped cheer us up no end, and now we're ready to look to a future which is just as exciting as before.
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