Last Night’s episode of Insight focussed on one question: how far should we go to save extremely premature babies? Here a mother posts her response.
I haven’t spoken much about that part of our ‘journey’ through prematurity. In part, I have kept it to myself because I am afraid of the judgement that will follow, not the least of which is from myself. Partly, it’s still just too raw. And partly, every day we try and let it go – all the strange and surreal feelings we are yet to process about the experience as a whole.
Last night SBS aired an Insight titled Edge of Life which discussed the feasibility of resuscitating 23 week gestation preemies at birth. The program brought to light one of the great taboos in the premmie community – given the known outcomes, should 23 weekers be resuscitated, or are the ongoing medical costs, quality of life probabilities and low survival rates reason enough to withdraw support?
This postulation probably seems completely foreign to most parents. Given the choice, would you not choose to give your baby every chance? While Insight did an admirable job in a very short period of time in discussing the legal, medical and ethical considerations and of introducing stories from families that have been in a position to make such a life changing decision, it is nearly impossible to give these stories real context to an outsider.
Many may have found it harrowing to watch and to hear the stories of the families affected by extreme prematurity. Some of the families had lost their little ones at or soon after birth, some had lifelong and extreme disabilities and some had survived against the odds. In some cases, when presented with the statistics, parents had chosen not to resuscitate their babies and in some cases they had requested any necessary support be given to save their tiny child. This is such a difficult concept to understand or explain.
Top Comments
As someone who has seen first hand how medical intervention can cause profound disabilities in severely prem babies, I agree that maybe the decision should be taken out of the parents hands. I MY step-son passed away 2 days after his 5th birthday. He had severe cerebral palsy and a laundry list of other medical and developmental issues as a result of the intervention. Imagine a 5 year old newborn, completely reliant and unable to control basic movement such as swallowing solid food. He spent 7.5 months in NICU/hospital away ter being born.
My husband would never trade the 5 years he had, and he was the most beautiful boy, but the reality is that the intervention, whilst saving lives, also can severely diminish the quality.
If the decision was taken away from the parents, the recovery psychologically, should the outcome not be a good one, would be easier. There would be a lot less guilt about the decision and the outcome because it was never their decision. No feelings of "what if we had have intervened? Maybe we'd have a * year old son/daughter" if you made the decision not to intervene because the decision was never yours. Guilt will still be there. I know my husband's ex wife felt profoundly guilty and inadequate that she couldn't carry him to term, and that can't be taken away, but it would definitely reduce it.
Thank you so much for sharing your story xx