The Endgame

By now, I hadn’t been sleeping well for weeks. I’d been waking up almost every night between 3am and 5am, tossing and turning, finally getting up to pace round the house, eventually going back to sleep again until the alarm went off at 6.30am and I headed back to work.

I was exhausted, and my memory and concentration were suffering. We wondered over and over what could possibly be causing this. There was nothing we could find in either of our family trees which pointed to cases of congenital mental or physical disabilities. Was it in my environment? Was it mobile phones, wifi, pollution, that piece of soft cheese? What had we done to deserve this nightmare?

A final MRI, carried out at 28wks, showed that the brain's mantle was thinner than it should be at that stage of gestation. This, we were told, was a sign that aside from the ventricles squashing his brain, the brain wasn’t developing properly regardless, and even if they could drain the fluid after he was born, he was going to have brain damage.

Overall, our to-ing and fro-ing went on for 9 weeks before we made a decision. We again decided, extremely reluctantly, to end the pregnancy on the basis that our baby would likely have a very poor quality of life, compounded by the fact that he was probably being afflicted by some sort of genetic condition which would put him at the ‘severe’ end of the disabilities scale.

I knew what was coming. I knew in going down the road I was about to go down I was choosing insanity – a just punishment for taking this abhorrent decision. I was once again given a little pot with a pill inside and a glass of water. I took it. We returned to the hospital two days later and once again I lay down in the ultrasound room. I knew that once the consultant put that needle into my stomach and into my baby that my soul would die with him, and there would be no coming back. We asked the consultant to take one last look at his brain, but the black mass had again grown since we’d seen it last, and there was little brain visible on the screen. He put the needle into my stomach, through to our baby, and put him to sleep forever.

Rage, frustration and no-one to blame.

I suppose I am angry that there is no apparent 'culture' of carrying to term a sick baby in the UK. There is no encouragement from the medical establishment to keep a baby with abnormalities. The strength to do that has to come from within yourself , with or without the support and encouragement of your partner and family. But my family didn’t want me to have a life looking after a mentally and physically disabled child, who would turn into a mentally and physically disabled adult. And I felt powerless to keep him regardless of everyone’s views. I know this sounds horribly weak, and it is. I was weak.

It was around this time that the BBC’s Panorama programme was aired which showed adults with mental disabilities being abused by their carers. I couldn’t bring myself to ever watch the program; the headlines in the papers were enough. I didn’t want that fate for our child.

http://www.bbc.co.uk/news/uk-13611089

And there was another story about how a woman killed her own son, who had autism. Reading this, the old me would have thought ‘how can a mother do that do her own child,’ but now I saw it through different eyes. She wasn’t evil, just utterly at the end of ther rope looking after her severely disabled boy. As much as I wanted to romanticise things and think that maybe we’d cope ok, and that ‘god doesn’t give you what you can’t handle’ (I saw that written on lots of the US pro-life sites), the reality of it was that not everyone is able to cope. 

http://www.guardian.co.uk/uk/2011/may/09/mother-killed-autistic-son-trial

Staring down the barrel of a gun

We pretty much had a scan every week from then on. The ventricles did nothing but grow at each and every scan. Even at only the second scan, the week after, the ventricles were now 17mm, in the ‘severe’ zone.  

What had initially been, to our untrained eyes, a couple of barely-noticeable black lines, rapidly turned into a black mass obliterating the brain. Here's a link to a lady who found herself in a similar situation with her baby. Our scans pictures were very similar. http://sociallyinappropriatemom.blogspot.com/2011/10/expectations.html 


An MRI indicated that it was probably caused by acqueductal stenosis, where the tube allowing the drainage of the cerebrospinal fluid is blocked. We were told that once the fluid ran out of space in the head, the skull would start to expand and then his condition would be termed ‘hydrocephalus’.

I didn’t want an amniocentesis. I wanted to keep our baby whatever. But again I caved in and had the amnio. It proved negative, but from our last experience, I knew this was no reassurance.

Within weeks, it got to the stage when they said our baby, again a boy, would be severely disabled. We were told that if we kept him, he would have brain surgery within days or weeks of his birth to have a shunt (a drain) inserted into his head and connected to his abdomen to get rid of the excess fluid. This would not be a temporary drain, but something he’d have for the rest of his life.

We just couldn’t believe it we were in this situation again. We were utterly bewildered. I couldn’t bear the thought of ending a pregnancy again and was furious with myself for having agreed to these tests, because if you don’t know, then there’s nothing to be worried about, and no pressure to do ‘something about it.’

I just kept wondering how on earth could a person go through it again and not end up suicidal or in a psychiatric ward? It felt like we were staring down the barrel of a gun. Why were we going through this? Why are we being persecuted? I am not religious at all, but even I began to ask, ‘what god have we upset?.’

All I knew that I was going to get this baby over 24 weeks whatever. At least that way he would get a birth certificate, proof that he did exist and did matter, and I would qualify for maternity leave, because I thought if I was going to have a nervous breakdown, at least I could have it under the guise of a maternity leave with a year to try to sort myself out mentally.

Coincidence?

I went straight home and googled ‘ventriculomegaly’. Here’s what it said on Wikipedia:

``Ventriculomegaly is a brain condition that occurs when the lateral ventricles become dilated. The most common definition uses a width of the atrium of the lateral ventricle of greater than 10 mm. This occurs in around 1% of pregnancies. When this measurement is between 10 and 15 mm, the ventriculomegaly may be described as mild to moderate. When the measurement is greater than 15mm, the ventriculomegaly may be classified as more severe. Enlargement of the ventricles may occur for a number of reasons, such as loss of brain volume (perhaps due to infection or infarction), or impaired outflow or absorption of cerebrospinal fluid from the ventricles. Often, however, there is no identifiable cause.

Associations

Ventriculomegaly is also known to be associated with other malformations such as agenesis of the corpus callosum, spina bifida, and heart defects. Fetuses with both isolated ventriculomegaly and with other anomalies have an increased risk of having a chromosomal abnormality, including that of Down Syndrome. Many conditions associated with ventriculomegaly can be defined prior to birth, but the possibility remains of other anomalies (either structural, chromosomal or genetic) only being identified later in pregnancy or after birth. Ventriculomegaly associated with abnormal findings and other structural malformations, often has an adverse prognosis, which ranges from disability (often mild) to death. However, in cases of mild isolated ventriculomegaly, there is around a 90% chance of a normal outcome.’’

I read this, and the thing that leapt out at me was that ventriculomegaly is apparently associated with agenesis of the corpus callosum, what our first baby had. But this baby has his corpus callosum, I had asked the ultrasound technician specifically. But what is going on, surely this cannot be a coincidence??

The Sum of All Fears

At the 21 week scan, the ultrasound technician asked that we see the consultant again. I thought nothing of it as I thought this was a formality, but afterwards my husband said he could tell that the expression on her face had changed.

We moved to the next room where the consultant scanned me again. He told us that the ventricles in the baby’s brain were slightly enlarged (11mm), something known as ventriculomegaly. As long as they didn’t grow any more, most babies were fine. Our hearts dropped off a cliff. I thought this is it, this is going to get worse, we are not getting out of this one. And indeed that is what happened.