I have been planning this blog for a while now; you see there was something that changed my entire life it happened on this day 33 years ago. It should have been one of the happiest days of my life but instead my world imploded. We had been trying to have a baby for a couple of years, I got pregnant for the first time just 3 months after we married, but I miscarried that baby and the next, so when I made it to 4 months without a problem the flags were hoisted and I stepped on to a cloud were I stayed for the next 5.

As I have mentioned before my husband was in the Navy and we lived in Gosport at the time, everything was changing at this point, he had been selected for officer training. He had already moved north to Rosyth and we were waiting for a house to be available for me to follow him. I told the doctor about the situation so I wasn’t booked into go to the maternity hospital at all as our baby would be born in Dunfirmline. Time passed and no house appeared I went to my anti-natals at the surgery and heard the little heartbeat, every time I was told everything was fine, I asked several times about my weight as I was huge but they said I was fine. With only 9 week to go the house was eventually found and in just 3 days I completed the packing and we arrived at what was our new home.

I arrived at our new home and had to spend the first two weeks cleaning as like our home in Gosport had been it was filthy. My mother came to see us as we were now in reach of her from Aberdeen, she could do nothing but go on and on about my weight. She was right I had started out at just 11 stone and at this point I was over 17 stone, at my first anti-natal at the hospital they were horrified at the care I hadn’t had down south, with the baby due so soon there was little they could do but monitor me. I had oedema which explained some of it but they seemed concerned. Mum stayed for a week after helping to get the house straight and then I started the wait, the wait that all first time Mums go through, every movement, every twinge I hoped that was it, but nothing. With no baby being born I went to another anti-natal, I was by now having trouble walking as the soles of my feet were even swollen, they admitted me, it was the 19th of April.

I was prodded and poked banned from getting out of my bed, the next morning the induced me, I was elated and ready to meet my baby. When the doctor broke my waters he examined me again and I heard him say to the midwife outside the curtain that I was a fat mother with a small breached baby. Breached or not baby was on the way and labour was long and slow. My husband arrived from work soon after and we waited for the big event. In the last stage of labour they kept telling me that I wasn’t pushing and I had to push harder, I thought and was sure I was doing all I could. Then suddenly the midwife said that it was the head as she could see hair, I just had to push, but I couldn’t shift it. The midwife decided that I needed help, the doctor was sent for as they thought forceps were needed. I remembered the brain damage caused to my brother and I at that point decided this baby was coming out. The nurse was astounded and even helped me to sit up and see, my baby was huge, the doctor had dismissed the possibility that he could be finding a huge head and decided it had to be a bottom. Well it wasn’t. With the head delivered the rest followed quickly and as fast as they told us we had a son they rushed him out of the room.

We looked at each other, I think both of us knew but neither of us wanted to say anything as we didn’t want to know. There was an endless spell of waiting, midwives fussing around but not one looking us in the eye; they spoke to the floor the walls anything but either of us.
Eventually a doctor came into the room; there was no baby with him. His face showed he had something terrible to tell us, the only word I head was Spina Bifida. Spina Bifida, calliper, maybe a wheelchair, I could manage, could I? yes of course I can, Spina Bifida, OK. My mind was racing through everything that I could remember about it and I wasn’t hearing anything else outside of me. I think the first thing I said was to ask to see him and they said no, NO, I wasn’t allowed to see him yet I had to wait again while they examined him. The time was filled by them giving me stitches and eventually telling me that my baby weighed in at 11lbs 2oz and was 25 inches long, our little Jeffery wasn’t so little. When I saw him at last he looked perfect, I was holding my first child in my arms and he was beyond perfect, he was beautiful. I was only allowed to hold him for a few minutes, then he was taken to special care.

Apart from becoming a mother something else happened that day, I went in to a numb bubble. Jeffery had been born in the early hours of the 21st April, I only saw him one more time that day, before they took him to Edinburgh Children’s Hospital, my husband travelled in the Ambulance with him. I saw no one for the rest of the day as I waited to hear what was happening. I wonder now if some of the painkillers they gave me were actually sleeping tablets, but I remember nothing until the evening when my mother and husband arrived to bring me up to date with what was happening. He told me that the Doctors had given him a full diagnosis and it wasn’t good. Jeffery had Myelomeningocele, the worst sort of form Spina Bifida, he was paralysed totally from the waist downwards. That was why his birth had been so long and slow a baby normally pushes with their legs, he couldn’t, he would never walk. I was telling myself I could cope, but it didn’t end there. He had no control of his bladder or bowel and they could do nothing to help other than an op which would pull the skin over the lesion. He also had Hydrocephalus, water on his brain. His future would have be complex surgery several times a year, all they could do was place a stent in his skull to drain the fluid, but it would have to be continual changed. The stent would frequently bloke and have to be replaced. He would never eat normally and would need a tube in place, he wouldn’t know who anyone was, he wouldn’t be able to talk, he would probably never be able to leave hospital and the thought even with all the intervention they could do at best he may live to be 2. Jeffery was christened that night as they thought he may well not make it to the morning, they wouldn’t let me be there, I had to stay in hospital, but worst of all we had to make a decision there and then.

I was 19 years old and I had to make a decision on life or death for my baby who wasn’t even 24hrs old. The numb bubble was getting number and number, I didn’t want to think about it, I didn’t want to have to make any decision but I had to. The three of us spoke for about an hour knowing with every word that there was really only one answer, none of us could put him through that. If Jeffery had that first operation, then we were committing him to a few years of what, lying in a cot for us, unaware of everyone and everything, not even wanting or enjoying food. It would be like making him a living doll, but really not alive. We decided that we could only do one thing for him and that was to let nature take its course. So then we waited.

As soon as I came out of hospital we went to Edinburgh to see him. I spoke then directly with the doctor and he reassured me that we really had made the best decision for Jeffery, I held him for a couple of hours, scared despite of what I had been told of hurting him. He had a strange sweet smell that I still remember, his legs and feet were deformed as they had been curled inside me, I never felt him kick, he couldn’t, for 9 month he had been punching me. Not once did he open his eyes, he showed no reaction to anything, I heard no cries, or a reaction to movement, he was a beautiful sleeping angel.

We went back to our home and I went into the bedroom first, it was gone, everything was gone, the cot, the pram, his clothes and toys all were gone. They had wiped him out of our home and he was still alive. How could they have done that? I screamed at them with more tears from the already overwork tear ducts that they had no right, I had put them there, I wanted them there. I know they thought they were doing the right thing for the right reason but they had no right to decide for me. They didn’t stop there, I was inside my own bubble, which they had wrapped cotton wool round and I was suffocating.

The next morning we returned to Edinburgh and my son’s side. I just held him again, willing him to show me he was alive, that they were all wrong and that nature was going to give him back to me, but still they talked behind my back and pulled the doctor in as back up, they had decided I was to be taken to Aberdeen, there was nothing I could do there and we didn’t even have a phone in our flat. I had no fight in me to say no, or why or anything else, no one was listening to me and no one was asking me, just as Jeffery had been taken from me in hospital by others, now other were taking me away from him.

We waited and the days passed. Day 6, day 7, day 8 and still he was with us. How do you make time disappear when you are waiting for your son to die. You tense and jump at every sound the phone makes, you wonder if you made the wrong decision, after all he is still alive and they said he would be dead by now. You watch the clock, you cry, you sit and look at the TV, you drink coffee and you cry some more. Day 9, day 10, day 11 and your doubts grow by the second, you start to think why, what did I do, why is he dying, I must be to blame, if only I could find out why. You wait and you listen to those around you telling you, over and over you made the right decision and how your next baby will be perfect and live, you listen to everything and hear nothing. That phone keeps on ringing and every time my heart stopped, you just wish it would stop. Day 12 ………..

He died on the evening of the 2nd of May, the phone call came and the world stopped for a very long time.