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??

Stop looking and it will be ok!!

From then on, we pretty much had a scan every week. We saw the head of the fetal medicine unit within four days of the initial scan. I should have known then that if you are in the NHS system and get to see the head of the department within a few days, you are in fact screwed. But we thought we were getting amazing service, which of course we were, but we didn’t realised where it was leading. He performed a CVS. This is where they stick this amazingly long needle straight into your tummy, without anaesthetic, and take a sample of the placenta to have a look at the baby’s chromosomes. It sounds and looks alarming, but my experience of it was fine – I'd had waxing which had hurt far more.

  

The results of this came in within a few days, and all seemed to be ok – no abnormalities had been spotted. Together with a scan soon after which showed that the exomphalus had cleared up, we thought we’d got away with it. But they wouldn’t stop the scans. The scans would last an hour. A geneticist joined us for one of the latter scans. This in itself was scary. Inside, I was getting angrier. I thought they were determined to find something wrong with my baby!!!! STOP LOOKING AND IT WILL BE OK!!!!!!  

They then found something called oedema, basically excess fluid, and this was under the skin in the head and chest. Still, this didn’t sound too bad; human beings are almost entirely made up of water, aren’t we??

Then we came to the 18 week scan. Here, they told us that they could see leaks in the heart and that the middle part of the brain was missing, a condition called agenesis of the corpus callosum, and thus the rest of the brain was malforming because of this missing bit. The consultant told us this is a Very Bad Thing. I don’t think there are words to describe what we were feeling. We simply could not believe it. We had been so hopeful, so optimistic. And now the penny dropped at what they were asking us to consider. No no no no no no no no.