I discovered an interesting blog written by the mother of 2 children who were both preemies in the NICU. It is called “The Preemie Experiment” and it gives an interesting perspective on the challenges faced by the families of NICU grads. We all cheer when a “million dollar baby” , born at 24 weeks gestation, goes home from the NICU. Unfortunately, it is not always a “happily ever after” fairytale ending for the family. They are often left with ongoing medical costs and struggle with care issues. In the worst cases, they are left with childen who will be dependent on them forever, and have to face the issues of what will happen to them after they are gone. This blogger tells it like it is. She loves her children immensely and is completely focused on their well-being, but she doesn’t pull any punches about how difficult and challenging it can be.
This post caught my attention because of the current debate we are having on the costs associated with healthcare.
This was the comment I made on the above post:
Interesting subject. I’m a former NICU nurse and at one time believed that everything possible should be done for every baby over 24 weeks gestation. Then I started working in home care and after viewing life from the family’s perspective, started to feel differently. The cost should be viewed not simply in financial terms, but the overall cost to the family’s total resources. That said, I think that very few working in neonatology have a clear view of what the ongoing costs will be to the family.
I don’t think our society should ever dictate who should and shouldn’t have babies . . . but I do think the ultimate decision about resuscitation of a premie should be an informed decision made by the parents themselves.
A neonatolgy fellow that I worked with some years ago was having contractions at 26 weeks. She said that if she delivered, she did not want her baby resuscitated. The hospital told her that would not be possible, they would have to do a full resuscitation. She and her husband rented a house in the desert where she planned to deliver away from medical attention.
Parent who are at high risk of a very premature delivery should be fully educated about the possible outcomes and be able to make an informed decision about what they want done. If they want everything done, then it should be done; if, however, they choose to let nature take its course, that wish should be respected.