Wednesday 9 March 2011

The Edge of Life and The Edge of Reason

Tonight in the UK the BBC are broadcasting a programme by Adam Wishart arguing the ethics of resuscitating and caring for babies born at 23 weeks. I am unable to watch as am currently in Australia on holiday, and BBC programmes are unavailable on the iPlayer here, so will have to wait until my return.

I feel a strong bond with this programme, as a dear lady I met through a mutual acquaintance is featured on this programme. From my understanding, the programme is looking primarily at cost, and whether it is "worth" investing in premature babies born at the very edge of viability, at 23 weeks.

Before I had Joseph I didn't really understand the term 'viability'. It wasn't until after I started my journey as mother of a premature baby that I encountered the start reality that in some areas of the UK babies are given support at 23 weeks, and others are left to die. It is the same in Australia, seemingly.

I have awful issues with the whole "dating of pregnancy", its not an exact science, unless the baby is the product of IVF etc we don't know the baby's exact date of conception and therefore we don't know, in weeks, exactly how old that baby is. Whilst we do have dating scans, and these are done at 12 weeks and again an anomaly scan at 20 weeks, its still not exact.

There was so much confusion with dating my pregnancy. Then at my emergency scan his head showed he was 27 weeks, but his leg and stomach measurement said 24. But once he was born, questions were asked by the unit staff as to whether my dates were correct, as Joseph seemed too strong and too well for a 27 weeker. However, if he had been older, then his weight would have been even more of an issue, as Joseph weighed what a 23 or 24 weeker typically weighs. I am fairly confident my dates were correct, but I am still unclear. Joseph had the steroids through me before birth, and had surfectant, so I think its the medical intervention that made a difference to Joseph, not that his dates were incorrect.

There's too much doubt with dating for me to be comfortable for decisions to be made on a number alone. And these decisions are typically made before delivery, before the doctors know how strong or how well a baby will be.

I feel strongly that decisions need to be made by parents, with good clear information from doctors, not by governments.

I feel also that in this culture of scans, amnioscentisis, genetic counselling and other various tests, we have, as a community, become disability averse. We see disability as a curse, as something to be feared, to be wiped out. As another expense society has to bear. But there are so many people, famous or not so, who enrich lives, are productive, and are important members of our community. I feel it is wrong to "breed out" disability. I do feel that the testing available has saved a lot of heartache and sorrow, as there are conditions where prognosis is poor, or just not possible, and I am not saying that anyone who has made the heartbreaking decision to end a pregnancy based on disability is wrong, as it is not my decision to make. I am grateful that we have options and choices, however, I do feel that my life has been enriched by the people I have met with disabilities, and my husband has a disability which is now routinely screened for and babies are terminated with this condition.

I am sure this documentary will raise more question than it answers, as I don't feel there is an answer. I do feel its a great shame that more funding isn't available into preventing prematurity. We need more research, more doctors able to do complex procedures and planning for those at risk, and better antenatal care. There are always improvements that can be made.

My heart goes out to all those who have had such early babies, who have had to make difficult decisions, who have seen their babies become angels.

I pray that as a community we can come together, and present some answers, and see that this debate is done with love, care and heart.

1 comment:

  1. It really disturbs me that an arbitrary number can be put on viability. Can they seriously say that they would not resuscitate a baby at 22+6 weeks but 24 hours later they would? I have heard of a baby who was born at 22 weeks (don't know how many days) and survived - I don't know if she had problems or not later in life but surely every life should be given a chance if the parents are willing to accept the responsibility of the child. I'll be very interested to watch this program.