I’ve just seen a report from India about Lali, the little baby girl born with two faces. I immediately wanted to find out more about this ‘abnormality’, so started searching. It took a matter of seconds for me to discover that I was right to assume that this was a form of conjoined, or siamese, twins, and I now had a label for it, craniofacial duplication, or diprosopus. Then I clicked on Wikipedia’s entry and discovered that they say it is not a single embryo partially dividing but rather that it is caused by a protein affecting cell division. This protein has an unfortunate name, so unfortunate that it makes me very sceptical, it’s called SHH, sonic hedgehog homolog!. I have looked further and…it is true, it is a protein located on chromosome7. So I satisfied by curiosity about the aetiology of diprosopus, I then wanted to know the prognosis. Being very basic about this Lali is essentially a baby who has one head, but that head displays two complete faces, do they both function? Reading the reports, they do as apparently whilst feeding with one mouth she sucks her thumb with the other. Her parents have refused to have investigations conducted on her so we don’t know if she has a single oesophagus, if she has I wonder if that alone may cause complications with regard to inhaling milk into the lungs. Reading all the literature it appears that this anomaly is generally accompanied by other congenital anormalities, often affecting the brain and the spine but there is no mention of this in any of the reports about Lali. What is her life expectancy, her quality of life? My understanding is that she will only have one brain, so in the absence of other problems I would guess that her life expectancy should be ‘normal’ but what will that life be like? Her parents seem to be trying to protect her from outside intrusion but that must be difficult, particularly as she is now being hailed as an incarnation of the Hindu Goddess Durga and that people are flocking to see her.
This is a very different scenario to the majority of conjoined twins where they are single entities each with their own brain, but joined not just externally but internally. Lali, is a little girl who by a 1:2.5 million chance has two faces, both controlled by a single brain so there is no decision here as to what is best for each baby, she is a single entity. How would I react to this, would I rush to surgery? Is surgery required for anything other than cosmetic reasons? I would certainly have wanted doctors to conduct scans to ensure that there was nothing life-threatening about Lali’s condition but, if they were clear would I want reconstructive surgery? Is Lali perhaps more fortunate having been born in India where she is being hailed as a goddess than in a Western country where she would be considered ‘abnormal’ and not revered but even reviled? I’m possibly being unfair here as there are conjoined twins, Reba and Lori Schappell ( Reba now being known as George ) who have successfully lived ‘individual’ lives within and outside of media attention. However, even these sisters they were placed in an institution until the age of 24 and it is only due to their determination that they now live normal lives. If they were born today would they still be conjoined, or would their parents have made the decision to seperate them?
My musing on this could go on, and on. I will be interested to hear how Lali is. I hope that she is well, that she continues to be seen just as her parents first baby and that all those around her protect her from people like me, the prying public.
After I had published this post I double-checked my spelling of ‘unique’ and through this I found a web-site called “Unique – but not alone”. This is a support site for families affected by rare chromosome disorders and also the professionals who work with them. It may be useful for someone reading this blog so here is the link http://www.rarechromo.org/html/home.asp.