The morning of our fetal medicine consultant appointment was the first time I managed to capture our baby kicking on camera. The first time we had really seen it as well as feeling it.
Mixed emotions followed. Our baby was brain dead, how was this possible?! At the consultants appointment we arrived crazy early, got a costa and had an early bird breakfast to try and gain some level of control/calm. We went into the appointment expecting the worst but hoping it was all a mistake and the scanner had gotten it wrong – our baby was fine.
The consultant scanned the brain and immediately looked at the spine. We looked at each other -the spine was “perfect” or so we were told yesterday. Why is she looking there rather than the missing piece of the brain?
It turns out the babies cerebellum was there it was just a banana shape and pushed down, this was being caused by spina bifida. With a lesion in the lumbar section of the spine causing a sack on the babies back where the fluid and cords weren’t being contained within the spine. Basically the vertebrae hadn’t closed properly on that section of the spine meaning the cord was exposed. It also meant the fluid wasn’t flowing from the brain to the spine properly causing the ventricles in the brain to increase with fluid, the cerebellum to be pushed down and into the banana shape, as well as a lemon shaped head from the fluid.
Our baby had spina bifida. It is un-fixable, the baby will be in a wheelchair, could have issues with it’s brain, would need a catheter, could have issues with it’s bowels and would have issues with fertility/sexual performance. There was a lot to take in.
However there was a new surgery that had been taking place at the University College London Hospital since October that we should be eligible for. They would perform surgery on the baby inside the womb at 25 weeks to put the cord back in the spine and cover it over with muscle and skin. This wouldn’t rectify the damage already cause but would prevent further damage. Reduce the potential need for a shunt. Increase potential mobility.
We had three options:
1. Prenatal surgery
2. Postnatal surgery
3. Termination
Although they had given us three options, they told us that they strongly believed we were eligible for surgery, unless the amniocentesis or the MRI that we would have to undergo showed up other issues with the baby. This to us eliminated one of the options, postnatal surgery.
Having discussed a little bit immediately afterwards, we felt that if the drs told us that we couldn’t have the surgery and there was anything else wrong with the baby that it would not be fair on the baby. We were so worried about acting selfishly because we wanted this baby so much.
We also have 16 month old twins who would be massively impacted by any decision we made. As the consultant said, we really needed to think on the impact this was going to have on their lives, not just the quality of life for the baby being significantly reduced but potentially reducing the quality of life for the twins.
Everything felt very negative. I felt completely pulled between wanting to do what is best for the baby I was growing, to wanting to do what is best for us as a family.
Spina Bifida Baby 