Hazel McHaffie

cranio-facial surgeons

Extraordinary twins: Separate or together?

There are times in life where I’m rendered speechless in the face of courage or fortitude way beyond my comprehension. And this week brought just such a moment: listening to the parents of conjoined twins in the ITV/STV programme, Extraordinary Twins, and to the doctors who undertake this gruelling and risky surgery.

The questions are overwhelming and often unanswerable. As one surviving separated twin said, whatever you decide you will be criticised. Ethics may be my field of interest, but these issues are in a different league from most.

Not only do the families have to contend with the shock of discovery when scans reveal this extremely rare anomaly, but they are then faced with a raft of massive questions.
Do we go for abortion?
If not, how will we feel when they are born?
How will we deal with other people’s reactions?
How will we care for these children?
Will we choose to have them separated?
When is the right time to do so?
How will we cope if one or both then die(s)?
Can we handle the responsibility?
What will it do to us and our family?
Can we live with the sense of guilt?
Will the children resent/hate us for making this decision?
Tears at my heartstrings just contemplating these dilemmas.

All this came across powerfully in the programme, through the experience of families who’ve trodden this path. I was on an emotional and ethical roller coaster throughout.

For some, separation was impossible, the shared parts were too intimately and vitally interconnected and important to each. One set of sisters shared sensations: even feeling the other one being touched, and seeing what the other was being shown! Another set spoke the same words together. In other cases, where separation might be possible, a joint life was deemed better for them, and indeed was way more full than I could ever have imagined. Some pursued different careers, got married, drove a car together!

But for others, the advantages of separation were compelling, though the risks were always huge. The burden of responsibility came across powerfully through the experience of one couple who were very undecided about separation, and inclined to wait till the twins could decide for themselves. They were put in touch with another mum whose girls were joined in exactly the same way – separate heads and torsos, but just one set of legs. Her bright, bubbly girls were now leading separate lives, both with one prosthetic leg and a colostomy bag. Her advice was robust: we parents choose to bring our children into the world; it’s our job to choose what’s right for them. Don’t you want independence for them? she challenged. (This idea of parental responsibility was a view I heard time and again in my own interviews with parents of infants for whom life-and-death decisions had to be made, so it resonated with me.) But this couple remained undecided. They visited other families – where different decisions had been made, met the children, asked them the questions, listened with strong emotion to the replies. And bravely came to their own considered conclusion.

As for the surgeons concerned – well, I can’t begin to imagine the price they pay. The series of operations needed to separate conjoined twins is tremendously complicated and only a small number of surgeons in the world are skilled in this work. They plan meticulously beforehand, every move plotted and rehearsed before they ever pick up a knife. The theatre is packed with people and machinery. Some parts of the procedure take many many hours – in one case 17! Sometimes the surgeons’ stamina and ability to make decisions, as well as the condition of the children, makes it necessary to stop mid-operation and continue another day – seems impossible, huh? Sometimes sadly the separation is a success, but the babies suffer complications like brain damage or stroke. Sometimes they die. But these skilled and exceptional doctors not only bear the responsibility, but also engage emotionally with the families. It was so lovely to watch one cranio-facial consultant visiting the children he had separated, months after surgery, and playing with them so beautifully. Heroes without a doubt.

I salute them all. They moved me to tears. I have absolutely no idea what I would choose in these circumstances.

, , , , , ,

Comments