30 May 2016

The responsibilities of parents

Quite often when we asked for things like access to Rumer's notes, or to be involved in medical decisions, we were told, in order to explain why they had policies against these things, that:

  • "No other parents have ever requested this."
  • "You are exceptional parents. Other parents wouldn't understand the notes."
  • "Not all parents want to be involved in medical decisions; some parents want us to make the decisions."

22 May 2016

Palliative care vs active treatment

Stereotypes and Realities

Fundamentally, when you have a baby with T18, you are told you have two options to choose from* (of course, you may not in fact be offered one of these choices):
  • Palliative care (also referred to as 'comfort care')
  • Active treatment (also referred to as 'full treatment')

However, what you are told, or understand, about these choices is likely to be very different from the realities.

13 May 2016

Why I don't hate trisomy 18

A lot of people proclaim to hate trisomy 18. I understand why; they feel it took their babies from them. They see it as an enemy that stole their longed-for child and left them with pain and grief. I get that.

It's just not the way I feel.

9 May 2016

To a hospital somewhere in the UK

I wrote this letter when Rumer was 10 weeks old and in PICU, after an online friend shared her letter from a major UK hospital denying treatment for her unborn son with trisomy 18. I didn't plan to send it. The child was eventually given full treatment by another UK hospital. Names have been changed to protect the innocent (and not so innocent).

6 May 2016

Full, partial or mosaic?

Trisomy 18. What is it? Most people can grasp pretty quickly that it means that you have three copies of chromosome 18.

Most of us have 22 pairs of chromosomes, each pair numbered 1-22, and a pair of sex chromosomes (XX for a girl, XY for a boy). Babies with a trisomy have three of one of these chromosomes instead of the pair. Babies with trisomy 18 therefore have three copies of chromosome 18.

See this image for a picture of the chromosomes of a boy with T18.

3 May 2016

What do you call your doctors? Jane or Dr Smith?

This article from the BMJ was retweeted by a couple of our neonatal consultants: Is it Jane or Dr Smith?

While I admit to having limited interest in how junior doctors address their consultants (although I was always quite surprised when they referred to them as 'Dr X'), I am more interested in the confident statement that:
Evidence indicates that patients want to call their doctor by their professional title. This has obvious benefits in terms of keeping a professional distance and engendering both trust and confidence.