On the 17 May, after enjoying a meal with my family to celebrate my Dad's birthday, we returned home and I experienced what was without doubt the most perfect, contented moment of my life. I wrote this (in a slightly different form) on the 19 May, but only now feel able to share it. I wrote more which I don't know as I'll ever share.
Zack had been quite poorly, but was now on the mend. He'd been put to sleep on an inflatable bed in the middle of the living room floor, but got up and stumbled sleepily towards me where I sat on the sofa. He clambered up and lay across my chest.I remember the warmth of his small body, his arm reaching around my neck, and his face nuzzled in my neck. I remember savouring the affection he showed me and revelling in the fact that I could bring him such peace and comfort.Vicky joined me on the sofa and I placed my left arm around her as she lent into me, sharing our warmth, peace, comfort. With my hand on her tummy, I could felt our unborn baby move and was sure this perfect moment was being shared by all four of us.It was then I realised this was the most perfect, contented moment of my life. Desperate for it to be captured forever, and never forgotten, I imagined some fogotten guest entering the room with camera in hand, ready to take the perfect picture. Of course I immediately understood that the intimacy of the moment would be ruined by such an intrusion.I looked forward with so much excitement to the next morning, hoping the ultrasound scan would be able to identify if we were having another boy, or the daughter we were now quietly hoping for.
Sadly, tragically, as well as showing that we were expecting a daughter, the scan also showed that she had spina bifida.
Further detailed scans at Kings College Hospital in London showed the spinal defect to be particularly severe. The defect was high in the lumbar region of the spine. Apparently this was unusual: normally such defects develop in the lower lumbar, or even the sacral region of the spine. The higher up the spine the problem occurs, the greater the risk of the child having no use of their legs. The consult stated that this would more likely than not be the case for our daughter. It was almost certain that she would be incontinent, never able to develop any bladder or bowel control. There was already a large amount of fluid on the brain, and this would probably increase after any initial operation to close the spinal defect. The necessary treatment to remove the fluid carries the risk of infection; patients can suffer repeatedly with meningitis, and this can cause mental handicap.
We made the choice we had to make. We worried we might have been taking the easy option, but in a way I think the opposite is true; we have suffered greatly so our daughter didn't have to.
That week Angel May Pearson's life ended before it had really started, two days before Vicky gave birth to her in the Forget Me Not suite at Basildon Hospital.
It took me six months to finish this post (everything up to this point) and has taken me another couple to decide to actually publish it; I'm still not sure I really want to, but it's become a burden not to.
We miss Angel terribly, and I guess we always will. X
