I keep saying no more, I can’t write this, it breaks me. But, someone keeps telling me I must. I have a story to tell that has to be heard. What good it will do, who knows? At least others will be more aware I suppose.
To tell this story I have to go back to the very beginning. To when he was born.
I didn’t know you see. No one told me I was carrying a disabled child in my belly. The hospital staff knew of course, but they made a decision, it was a costly one for them but that came much later. They decided I didn’t need to know and they would tell me when he was born. Make it all a big surprise, make out they were as shocked as I.
Just one of those things they said, it could happen to anyone, they said.
Do you know what they didn’t say? They didn’t say, We’re sorry. We knew all along, but we made the wrong decision and we didn’t tell you. Fait accompli!
We dealt this hand of cards for you, the hand you held? That’s all gone now. There’s the door, it’s dark down this road so do take a torch with you. BYE!!
I was in shock, my now ex husband was in shock, he dealt with it less well though and blamed his god and his devil and all of his demons for the hand we had been dealt. OH WOE WHY DID THIS HAPPEN TO ME he would cry.
But it didn’t did it? It happened to my tiny baby boy. He had come into this world and people were already saying, poor mite, so sad, what a shame, will he be alright?
HOW THE FUCK WOULD I KNOW?
I had never heard of the condition he has, spinabifida. I didn’t know what it was, how dangerous it is, what it meant for my baby, what problems he would face? I knew nothing.
Within an hour of his birth he was whisked away to a specialist children’s hospital some 50 miles from where I was, he needed surgery to close the lesion on his lower back. It was the size of a grapefruit. Of course, I had had a C section and epidural and could not be moved, the children’s hospital didn’t have the facilities to care for me. My ex went with him. Oh the drama that caused! That man would milk that drama for the rest of our long and painful marriage.
It was the only time I was not with my boy during surgery from that day to this. 29 years and counting.
I lay in my hospital bed railing against my numbness, I needed to get out of here, I needed to be there, I needed, I needed, I needed. No one could help me. I had to wait. While I waited, my baby went into surgery for the very first time in his life, the day he was born He was just 4 hours old. The surgeon closed the lesion on his back, and informed the husband that a shunt should be fitted in his head too, hydrocephalus would come next.
I will call my ex husband every name under the sun and I have zero respect for that excuse for a man but I will give him this. He refused to make that call on his own. He phoned the ward and they brought the phone to me.
‘They want to do an operation on his head in the next few days.’ he said.
‘What for?’ I asked.
‘I don’t know, something called hydrocephalus. I don’t know what it is.’ He said.
‘Tell them to wait until I’m there and they can talk to us both and we can say yes or no then. I want to know what it is first.’ I said.
‘Okay.’ He mumbled, and hung up the phone.
Something deep inside my mind had screamed, WAIT!!
I rang the bell, the nurse came, I asked her what hydrocephalus is and she looked at me blankly. I asked her to get the paediatrician who had been here earlier. She did. He came and I asked again, what is hydrocephalus?
He looked surprised, but then he answered, ‘hydrocephalus is fluid on the brain, the ventricles in the brain act like a pump to pump the cerebrospinal fluid in one complete cycle around the head and body. In some cases one of the ventricles will shut down and a shunt will need to be fitted to do the same job or the fluid will build up in the head and cause it to swell and put pressure on the brain. Left unattended, it can cause brain damage, in extreme cases there is a risk of death.’ ( this is my layman’s explanation, he explained it properly.)
FEAR! BLACK CRAWLING FEAR! I could feel it climbing up through my numb body to my mind and I knew the very first moment of absolute terror in my life.
The Paediatrician was very good, he explained it all to me and before he left he said this, I’m not sure how you knew about the chance of hydrocephalus developing at some point, but don’t worry about it for now, he is showing no symptoms at all of it developing, both ventricles are working fine right now. Let’s take things one step at a time. One in every 100 children with spinabifida escape the hydrocephalus. It doesn’t affect every single one. Sometimes, we are lucky.
I’m numb. My brain isn’t processing information, he just said, hydrocephalus is a killer, he needs a shunt, he hasn’t got it yet, he might not get it. He might be 1. not 99.
Two days later I held my boy in my arms and fed him for the first time. His surgeon came to see me and the husband later that day. He wanted to do the surgery, he wanted to fit the shunt.
I asked him if this was prevention rather than cure?
Well, yes, he said, somewhat nonplussed at my questioning attitude. ‘So, I need to know’ I asked, ‘does he have hydrocephalus now?’
No. He replied, but he will get it, it’s just a matter of when not if. We may as well strike while we can and do all his surgery now so he can get over it all at the same time.
What he really meant was, it’s cheaper to do it now than wait. Everyone is already assembled and in the building. Let’s crack on why don’t we?
I explained what the paediatrician had told me. I explained that he had said, lets not jump the gun. 1 in 100 remember that number. My boy right now, is 1.
He harrumphed at me, he berated me, he called me a fool but without my consent he could go no further.
For the first in a very long line of times, I uttered these words.
If it ain’t broke, don’t fucking fix it! Fix what is broken instead.
A foot note.
He did develop hydrocephalus, 9 months later. He had the shunt fitted by a different surgeon who said it was good that we had waited, we had given my boy a much better chance of surviving one surgery rather than two in the first week of his life. Besides, he said. If it ain’t broke, don’t fix it till it is. Where’s the harm in that?’
I wish he was still in the NHS.
A note for anyone who wants to know about Hydrocephalus.
Hydrocephalus is a condition that occurs when fluid builds up in the skull and causes the brain to swell. The name means “water on the brain.”
Brain damage can occur as a result of the fluid buildup. This can lead to developmental, physical, and intellectual impairments. It requires treatment to prevent serious complications.
Hydrocephalus mainly occurs in children and adults over 60, but younger adults can get it too. The National Institute of Neurological Disorders and Stroke (NINDS) estimates that 1 to 2 of every 1,000 babies are born with hydrocephalus.
Cerebrospinal fluid (CSF) flows through your brain and spinal cord in normal conditions. Under certain conditions, the amount of CSF in your brain increases. The amount of CSF can increase when:
- a blockage develops that prevents CSF from flowing normally
- there is a decrease in the ability of blood vessels to absorb it
- your brain produces an excess amount of it
Too much of this fluid puts your brain under too much pressure. This pressure can cause brain swelling, which can damage your brain tissue.
In some cases, hydrocephalus starts before a baby is born. This can result from:
- a birth defect in which the spinal column doesn’t close, such as spinabifida
- a genetic abnormality
- certain infections that occur during pregnancy, such as rubella
Hydrocephalus can cause permanent brain damage, so it’s important that you recognize symptoms of this condition and seek medical attention. The condition is more common in children, but it can affect people of any age.
Early signs of hydrocephalus in infants include:
- bulging fontanel, which is the soft spot on the surface of the skull
- a rapid increase in head circumference
- eyes that are fixed downward
- extreme fussiness
- excessive sleepiness
- poor feeding
- low muscle tone and strength
All images are courtesy of the internet