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Should Deformed Newborns Die Untreated? A Care2 Member Perspective

Should Deformed Newborns Die Untreated? A Care2 Member Perspective

 

Should a terribly deformed baby be left untreated in the days until it dies?  Care2 blogger Kristina Chew told the story of one such child, known as Cyclops Baby, and Care2 member Melanie Blow wrote this moving comment.  We thought it deserved a post of its own.

A few years ago a cousin of mine had a deformed baby who lived about 90 minutes postpartum. She was having multiple ultrasounds a day, everyone knew it was unlikely that the baby would live. But she was allowed to hold him, dress him, take pictures with him, Christen him and let his grandma meet him. She had a funeral for him. It was one of the saddest things I’ve ever seen, but life went on. She had another child since then. Mom, dad, sister, new baby and the imprints the deceased baby left on all of them are part of that family. The tragedy affected all of them, but it didn’t ruin any of them, because they were treated compassionately by the hospital staff and allowed to make some choices, to exercise their personal empowerment at a time when the universe was stripping most of their power away from them.

Sometimes we both want and need mementos of the things that hurt us the most. I still have a ripped-up shirt that I almost died in during a hiking accident, it reminds me of how luck I am. I saw a picture one time that was taken as my uncle was molesting me — I don’t yet have custody of that, but I still am trying. Among other things, that picture proves how strong I am. I have a friend who’s a tattoo artist, who said she had an entire support group for women who lost babies come to her for mementos of the baby tattooed onto their skin- a footprint, a birthdate, something like that.

For a doctor to let his own fear of an ugly situation get in the way of empowering a patient and treating her, and her child, compassionately is criminally, inhumanly wrong. It does sound like the baby would have died in infancy no matter what, but they could have died a much better death than this.

Hiding one’s head in the sand and hiding ugly truths accomplishes nothing. If nothing else, I’m glad the doctor came forward and wrote this piece.

 

Read more:

Infanticide in New York City: the “Cyclops Child”

UPDATED: Facebook Bans Mother Over Photos of Baby With Rare Birth Defect

Lost in Desert, Autistic Man Craved Human Contact

Mother Abandons Daughter With Disabilities In Bar

 

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Photo from Early Modern England

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71 comments

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11:45PM PDT on Aug 9, 2012

Well, my grandmother lost one of her babies, because back then, they didn't have ultrasounds nor c-sections. My aunt that never was, was born breech, with the umbilical chord wrapped around her neck. The hospital staff just quietly took the baby away, told her it was a girl, and she was buried before my grandma got out of the hospital. She never got to hold the baby, or even go to the funeral.

My aunt lost one of hers, at 3 weeks old, due to heart problems. She didn't get much time with her baby either, and while she got to go to the funeral, didn't get to do much for the planning.

I lost mine at 33.5 weeks gestation. I had an abruption, and while my son was small, he was perfect in every other way. Under other circumstances, I may have been able to take him home, but, no. The placenta pulled off the uterine wall, and cut off life support to him, and I nearly bled to death. I got to hold my baby, sing to him, and I got to dress him and help plan the funeral.

Hospital compassion can mean the difference between having issues over a lost baby or having closure that you got everything you could from a tragic incident.

12:34PM PDT on Jul 18, 2012

It's a difficult case. I believe that the parents should be notified of their child's deformities and perhaps with hold sudden viewing of the child until the mother and father have been completely informed of the situation and what psychological trauma could result. Perhaps they can be referred to a psychologist. A lot of us may think we can handle seeing any deformity and even doctors (and vets!) going into practice may think they are prepared for anything--only to find they are just as horrified as anyone else. We cannot always box our emotions away, everyday. Some things will just be shocking. Even things that are made to look human can be horrifying--hence the uncanny valley.

Pam is right. It is one thing to say that a parent will always humanize the child and want to hold it, but in reality some mothers may react violently and become depressed--maybe even blaming themselves for the child's deformities. By all means inform the parents, but only after careful discussion to ascertain the parent's wishes. And the parent should ultimately decide the fate of the infant, not the doctors. I do think that in the 50s and 60s doctors overstepped their bounds by "correcting" intersex children (sometimes informing the parent, sometimes not) or quietly euthanizing deformed infants and just saying they are still born. However, it was not done out of callousness. Today, parents should be provided with all info and be allowed to make decisions on whether to let the child die, have

8:26AM PDT on Jul 18, 2012

Thank you for posting this comment separately. You're right, it deserved a place of honour.

6:43AM PDT on Jul 18, 2012

I'm so glad that times have changed. We no longer treat our doctors as if they are God. We are able to think and decide what we want to do.
I'm glad this family was able to do all the things they did, before the child passed.
Now even when a child is stillborn, people are encouraged to hold their child. I wish I would of had the choice when I had a son that did not make it in this world alive. It haunts me even today, after 25 years.

4:05AM PDT on Jul 18, 2012

Parents have a right to know. They are adults and must be respected as such and doctors should quit thinking they're Gods.
As far as the child is concerned, if it's born alive, it deserves care and love until such time it* no longer requires it.
* I use "it" because it's gender neutral, not because I consider a child a mere thing.

3:42AM PDT on Jul 18, 2012

THIS MUST BE THE CHOICE OF THE PARENTS BUT THEY MUST REALIZE HOW HARD IT IS FOR THE ALL FAMILY TO HAVE SUCH A CHILD...AND IT CAN BREAK IT TO...

10:54PM PDT on Jul 17, 2012

Every child regardless of its condition should be treated with respect, love and the utmost care. It isn't the period of time that we spend on this earth but the quality of care that we received. I know from experience of the pain of losing someone so precious and yet that person will remain ingrained in my memory forever. They were a part of my life on Earth for a very short time but they are family and a part of my soul. Nobody, no professional, or Govt should have the right to say a person isn't a person because of a disibility and in some cases the fault of the very institution that should have protected them. It is shameful for professionals to say, 'not perfect' and so must be discarded. Some professionals even might appear perfect themselves but what is the condition of their mind/soul. Even a damaged body, mind could have a beautiful soul. A life is a life. We need to look deeper than the outside appearance. It concerns me when old people in some countries could be killed because the institution wants the bed. I think a death culture and one where youth is idolised can be a very dark path for society to go down.can go down. I believe there is a time to live and a time to live decided by one who created all life and I would rather trust Him to that outcome than a society bent on this death culture.

9:56PM PDT on Jul 17, 2012

This is remarkable and wonderful, written by a person I would like to know and who enriches all who know her. In my practice as a therapist, I have helped mothers deal with grief, held for so many years, because they were denied, what I consider to be a right, time to say goodbye to their stillborn child or their severely handicapped child whose death was imminent. There are few instances where the deformities are so great that this time could not be given. This process allows the mother to "let go" in a healthy way.

Doctors have for years made very difficult ethical decisions regarding the lives of very severely deformed births. Many consider these little more than births that should have naturally miscarried and for some reason, did not. They wish not to perpetuate devastating hardship on the parents or on society.

7:02PM PDT on Jul 17, 2012

Thank you.

7:02PM PDT on Jul 17, 2012

Thank you.

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