For Premature Babies, A Fine Ethical Line Between Life and Death

Monday, August 20, 2012

premature baby, hands (flickr: Matt Davis)

One of the medical areas where technology has most rapidly advanced is neonatal care. In the 1960s when Neonatal Intensive Care Units first opened, a premature baby had a five percent chance of survival. Now, that chance is at 95 percent.

Despite this high survival rate, premature babies often have severe disabilities as a result of their time in the NICU. Doctors and parents are then left with tough decisions about which babies they fight for.

Art Caplan heads the Division of Medical Ethics at NYU's Langone Medical Center. Tami Gaines is the mother of two prematurely born twins and author of the book "Preemie Parents: 26 Ways to Grow with Your Premature Baby."


Tami C. Gaines

Comments [6]

emjayay from Brooklyn

In wonderful old days when everyone would pull together and help, the two babies in question, and all the other ones in their situation, would be dead. Even ten years ago for many, and twenty years ago for many more. Does anyone think that was also tough on the many mothers in that situation? They also loved them too much to let them go, and they went.

And many mothers for that matter dying in childbirth and often the healthy baby as well, the farther you go back.

We now have the technology to for example save babies with less than half a brain (the higher thinking non-reptilian parts missing) and through application of millions of dollars of technology allow them to live many years. Not that they necessarily know much of anything about it. And maybe they are loved by their families who cart them around and sevice them 24 hours a day.

We also have the technology to get a pretty good idea of what's going on and what to expect in most of these cases many months before birth, and to safely end what Mother Nature often takes care of herself. As humans we must use our judgement. One operation to fix a hole in the heart and end up with a perfectily healthy child and adult is one thing. Investing multiple ongoing surgeries and interventions and therapies for years on end and then a lifetime to keep a baby with brain shortcomings going at the lifetime cost to society of multiple millions of dollars is another. Ending the pregnancy may be the humane and responsible choice.

The whole use of millions of dollars of other people's resources to please the ego of some person isn't a miracle. It's egocentric and irresponsible.

Aug. 22 2012 12:05 AM

I understand concerns from taxpayer as I am one. However let me tell you froma one father's point of view. First, we are talking about a mother who by nature has about the closest bond of love btwo humans, her and her baby(Born or unborn). To abort a life that you helped to procreate brings suchmental anguish some have even tried to end their on lives at some point later because of guilt. Because of not being able to predict the future, who's to say how a pre-mature baby will turn out in the future.Socioties love in genreal has cooled down where once everyone would pull together to help, now we critsize mothers for still expressing that natural love that bot parents sould share. One last thing to think about. What about all the children born in full term and either had developmental problems or just wound up in homes due to abandonment, lost of parents or even paents who just were to busy to care. I could go on and on about the moral issues why Ms. Gaines did what she did, but simply stated in reflecting the image of the Creator of life she loved her two babies too much to let them go!And that love will carry her whole family through all of their lives. Thank you for sharing your love Ms. Gaines!!!

Aug. 21 2012 11:26 AM
Michael from Brooklyn

Tami Gaines, the mother of two babies with health problems, referring to the one who was most severely compromised, said "if he wasn't supposed to be here" he would not have survived.

First, there is no "supposed to be". If you do insist on looking at things that way, his survival was NOT "supposed to be". Only the very latest in modern medical technology and expertise made the baby's survival possible. Only millions of dollars in medical care and millions more dollars of public money for medical and special needs care in public schools and no doubt publicly funded programs over his lifetime, paid for by everyone else in the country, make this possible.

Millions of people in this country (not to mention all over the world) live in poverty or close to it, in most cases working hard all day at one or more jobs. Unlike other comparable countries, at least until the ADA kicks in (unless the Republicans manage to snatch it away) many millions in this country can afford little or health care at all. The decisions of Ms. Gaines and other like her are resulting in vast costs to every other person in the country, and we did not get to participate in the decision.

If Ms. Gaines has the personal resources to pay for all the medical and other extra care her son has used and will continue to use for a lifetime, fine. If not, her decision is simply selfish as characterised in a comment above, and immoral.

Even her daughter, with fewer yet severe problems that would perhaps not be surviveable a few years ago, has incurred and is continuing to incur substantial costs to society.

Ms. Gaines should donate any profits from her book to the IRS or the whatever private source the funding for all this is coming from, although I'm sure that would be a drop in the bucket compared to the costs to society her decisions have and will continue to incur for decades.

Aug. 20 2012 04:32 PM
jo anne

This is not an easy decision to make but as a special ed teacher who works with students who have multiple disabilities and are medically fragile, their lives never get easy. There is so much hope on the families' part until the students become teenagers and then young adults. Most families cannot take care of these adult children and end up placing them in group homes. Sadly, parents are never free of the decisions they have made and it is also sad how hope becomes a thing of the past for many families when they realize their children are never going to get better. My heart goes out to families with these situations.

Aug. 20 2012 04:08 PM
Katie from union nj

I was born premature and i have a cousin who was born severely retarded and has had a diminished quality of life despite best efforts by her family to give her all they could, so I feel I can understand some of the issues in this story from an insider's perspective. I'm also a mom of 2.

About such compromised preemies, I have to say that it's all well and good to choose to bring such compromised people into existence but as a mother I know that I have to take the long view, and try to imagine the unexpected or undesired outcomes for my children. While medical miracles are being wrought every day in NICUs around the country, what is the longterm picture for these kids and what happens when they are 20, 30, or 50? what if mom is single, and dies or becomes disabled, or loses her job/insurance? what are their adult years going to be like?

I do think it's selfish on the part of some parents to bring sickly children into the world--it makes them feel better about themselves but what does it do for the kids, and realistically, for the adults they will become? No kid of course will say "I wish I had been aborted" but they may very well say, "I hurt, I'm depressed, and I have nobody to care for me" for years after that mom is gone.

If faced with a similar

Aug. 20 2012 03:55 PM
meatwnyc from Brooklyn

Who should be paying for the preemie babies? Not to be cold but a lot of the costs are born by the state, IE the taxpayer. The developmental issues are often expensive to deal with as is educating a child with developmental issues and right now a lot of that is born by everyone by "the system", and unfortunately it's not really sustainable.

I'm not saying these children don't have a right to be born or the parents should be forced to have abortions, but often the costs of their decisions are being born by the taxpayer, and that's not fair either.

Aug. 20 2012 09:51 AM

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