So Sad -

[andromeda31]

I think it might be easier in today's world...we can google cyclops child to be able to see what the condition really looks like. (I admit it, I did) A person would be able to prepare for seeing the condition in 'real life'...to get over the shock of it and be able to provide comfort. I don't think it would be a surprise today like it was at the birth back then...they would see the deformity on the 18 wk ultrasound. Hopefully at that point, doctors/nurse/social workers would discuss things over together with the family and everyone would be prepared instead of the doctor in charge making a splitsecond decision to lie at time of birth. It's been my observation that women seem to have the values of compassion more often than men. I always think about that when I am at the hospital-how many more moms I see vs dads. I know for sure in my own home, the caregiving is mostly done by me. Though Brian does a lot with the boys. I always wonder if Caitlin were a boy, would he do more stuff with her or would it still be me? I think there are young people out there that are very compassionate...I am lucky Brian's sister has a special bond with Caitlin. Nothing bothers her at all! She sees the child not the medical condition. Even when C was in her hip surgery frame, she was over here helping lift and entertain C. And his brother's wife volunteers and spends time with a boy with downs syndrome. can't think of any male caregiving examples in my life...I remember when Brian's grandma was in a nursing home it seemed like his mom & aunt were always there and the uncles were not. Anyway, I would hope that in today's world, if such a baby were born and had decision made not to treat, that there would be protocol in place to do comfort care....like Donna suggested, the volunteer baby holders, etc. Especially since nowadays, it would not be a surprise at birth. I think that doctor in the article had to think of the baby as not human to justify how poorly they all treated the baby....and that was wrong.

Lisa O.

[Donna Thomson]

Lisa, yes, sigh. You are right about men, women, today's medicine vs years ago. Some things have changed and some haven't. Clinical medicine is still essentially a male domain and only infrequently do you see 'love' or 'emotion' or 'real caring' in medical discussions when its taken into account as a real factor in healing, not a token nod to family who cannot be relied upon to be dispassionate in decision-making.

[Earth Mother 2 Angels]

((((((Donna))))))

Do young people today have the nurturing instinct? Yes, but generally, I see a lot of detachment and selfishness among today's youth. Bullying is a very big problem in our schools. Communication is limited to texting, using abbreviations rather than words (which is ruining our language, I think), and young people are connected to some kind of technological device every waking moment. The computer games, which I see advertised on TV, are terribly violent and war glorifying. Not good stuff for our future generations.

Due to funding cuts, our educational system is suffering dreadfully. So we aren't producing thoughtful adults. The world is so messed up, but everything is easy for today's youth, because they don't have to think.

When I was a teenager, I unofficially assumed the role of caretaker for a young man in our church group, who was a couple of years older than we were. He and all three of his siblings were born with DD. Two of his siblings died very young, and he was the oldest child. His father was our Asst. Pastor.

I kept track of this young man on all of our church outings, during our meetings, and any church gathering. It just happened to turn out that way. I didn't volunteer. And I became a tad bit resentful as I got older that I was missing out on the fun of just being a teen in the group. I couldn't let loose on my own, because I had to keep an eye on him. So, I shared that with our adult group leaders and asked them to take some of that responsibility off of my shoulders. They did, and apologized for taking me for granted, but I still couldn't stop feeling responsible for this young man.

Years later, Michael transferred to another County program, and this young man, now middle-aged, worked at the school as a volunteer. He remembered me, and he followed me whenever I was at the school for Michael, chatting up a storm and asking me to marry him.

Do young people today do these same things? Well, my neighbor's daughter does. She started her careproviding when she was only 10, looking after the smaller children in our neighborhood during our get togethers. As a teen, she started an accelerated nursing program, and she continues now to pursue nursing. She cares for a 90 year old woman, who lives in her own home, and she works at a convalescent hospital, whose patients are primarily elderly. She helped her grandmother care for her dying grandfather, and now she and her parents live with her grandmother and are there to care for her.

When I think about the Volunteer Grannies in our NICU, I realize that they've had a life time of experience to build up all of the love they have to give these wee ones. Maybe they were like me and my neighbor's daughter, who had that caregiving bent at an early age, or maybe they acquired it through their years of loving their children and grandchildren. However they got it, they give it back tenfold.

When you ask where were the values 50 years ago that allowed this child to suffer and his parents to be deprived of information, I don't have an answer. Medicine was rather secretive then.

People actually whispered the word, "Cancer," as if saying it was like cursing or the death rattle. Mental illness was treated with shock therapy and lobotomies. Women were having hysterectomies, like they were going out of style. And valium and its other friends (Milltown, Darvon) were being doled out like candy to housewives.

No one dared question a doctor. Doctors were revered and treated like demi-gods. The doctors began to believe their "press," if you will. They embraced that power, so they could get away with telling you that your baby died, and that it is best if you don't see "it," and a couple would accept that as truth. People were not informed at all about health issues, and they did not even contemplate disputing a doctor's orders.

On the gender questions ~

I am seeing more female doctors cropping up in our hospital. Young, enthusiastic women, with intelligence and compassion. I like that.

We also have more male nurses now, which is also good.

Many nurses have commented to me and Jim about how unusual it is to see the Dad visiting, let alone spending the night at bedside and advocating for his son. Jim is there every night until morning for Jon in the hospital, then comes home, so that I can spend the day/evening with Jon.

But I don't fault men, who aren't more nurturing, either, because that's generally not their role. And many men, when they are thrust into a nurturing situation, are uncomfortable, because they feel like they are out of their element. They want to fix it. They can't, and they may not have been guided in how to express their emotions. It's quite frustrating, I would imagine.

We cry. Men, not so much, because they think that's a sign of weakness.

Ouch! My thought process hurts! That's enough for now! Especially since I've been writing this in spurts for awhile, and it might not make a lot of sense. But I hope you get my drift ~

Love & Light,

Rose

[Donna Thomson]

Of course I get your drift, Rose, you are as eloquent as always and I agree with ALL you say!!! Funny you should mention the gender issue, it's the subject of my new blog post. I would love to know about what you think - I believe that caregiving is still principally a women's issue and that we are at risk of being exploited. But what is our role in speaking up for ourselves as you did in the youth group? Who will take up the slack in caring? I think we just need get a lot better at sharing the care in a network. It's so tricky!

[Earth Mother 2 Angels]

((((((Donna))))))

I Googled The Cyclops Child, just to get a flavor of what is being said about the article around the internet. Here's a sample of what I've found:

Dr. Neuman's addendum to his article ~ a response to readers' comments:

http://www.psychologytoday.com/blog/...child-addendum


Mom of child with autism gives her opinion of The Cyclops Child article:

http://www.care2.com/causes/infantic...ops-child.html

(Plus 250 comments)


Article in The Atlantic about Cyclops Child by an M.D., who is critical of Dr. Neuman:

http://www.theatlantic.com/health/ar...spital/259810/


It appears that Dr. Neuman doesn't have a lot of fans. If he was seeking absolution by writing this article, he failed miserably. And he still maintains at the end of his addendum that he would like to stop thinking about it. So, again, it becomes "all about Dr. Neuman."

He defends calling the child a monster, because that was an acceptable term used at that time. He still maintains confusion over whether the child was a human being and deserved respect and dignity.

Dr. Neuman states that the mother might have been "crippled" by seeing her infant. That was her decision to make. She should have been told about her child's condition, gently and compassionately, then asked what she wanted to do. She could have chosen not to see her baby, and that was her choice to make, but an arrogant doctor deprived her of that right.

Dr. Neuman's argument that the child could not be fed may be inaccurate. Surgically placed feeding tubes started in the mid to late 1800's. So, they definitely existed in 1960. It couldn't have been placed endoscopically for this child, if they even had that capability then, but a method most likely existed to insert a feeding tube at that time. For hydration, the child could have been hooked up to a saline drip IV. For that matter, the child's mother could have pumped milk, and it could have been put into an IV bag and fed that way. Or, if not the child's mother, then a wet nurse could have provided that nutrition.

I'm not talking about life sustaining measures for this child, who obviously couldn't survive into childhood. I'm talking about comfort measures to prevent the pain of dehydration and starvation.

The infant lived for 13 days. Thirteen days of pain and isolation. I am dubious of this doctor's claim that he held the baby every day for 13 days. If he had done so, he certainly would have developed some kind of affection for the child. How do you cradle an infant, even an infant whom he disregarded as an infant, for 13 days and not feel a bond? Dr. Neuman doesn't describe those feelings at all in his recounting of this child.

If his purpose was to begin a discussion about ethics, then he succeeded; however, the ethics we're discussing are the ones that he still seems to lack.

What kind of psychiatrist doesn't realize that every mother, who loses her child, is devastated permanently by that loss (his word: crippled ~ another archaic term)? The child's age doesn't matter, nor does the child's illness or the reason for the child's death.

As a psychiatrist, Dr. Neuman should understand that the truth is what every parent wants, however painful the truth is, because lies compound the questions and the turmoil surrounding their loss.

And, imagine this ~ You are the parents of this child, and you are still alive (your age is late 60's or early '70's). You are surfing the internet, and by some odd circumstance you land on this story. You think back to the time your child was still born at St. Vincent's hospital in New York. You realize that this infant is your child.

What if you had a funeral for your infant? If your child lived for 13 days, then whose child did you bury only a few days after you gave birth?

What if you'd also had several miscarriages, and perhaps another "still born" child?

I can think of more scenarios, but even if this couple continued on with a normal, typical, fairly contented life, their anger would be justified to find out that they had been deceived about their child.

I know what I would do. I would retain a fantastic lawyer, then I would sue whomever I could sue, directly or vicariously. With the money from the lawsuits, I would establish a foundation to protect the rights of parents and send lobbyists on their behalf to persuade our legislators to establish a specific moral and ethical protocol for physicians and medical staff to follow in the case of an abnormal birth.

Do we have the right to dictate how physicians and medical personnel respond to our crises? I think so, since we are the reason why they are employed and thus paid. And, they have taken an oath to "first, do no harm," and we have a right to expect them to keep that oath.

Can we legislate and regulate the medical care industry with regard to situations, such as these? Given the number of malpractice lawsuits filed annually, I'm thinking we can.

In 2012, a mother can tell a court and jury, "the doctor told me my baby was dead, and that it was better for me not to see my baby. When I demanded to see my baby, he asked me to trust him, and he refused to let me see my baby. I don't even know what they did with my baby, because I was discharged from the hospital, and not allowed to go to the nursery." I feel fairly certain that she would win her lawsuit.

I'm not a litigious person, but most of the time, the only way that things change is through laws. A case like this one could be precedent-setting and lead to stricter oversight of life and death decisions for everyone, regardless of their age.

Of course, the odds of the parents of this child reading this article and recognizing that it is about their child are pretty remote, I suppose. But not impossible.

Donna ~ please post about your new blog entry so we can discuss it in a new thread! Thanks!

Love & Light,

Rose

[Donna Thomson]

Rose, I absolutely agree with everything you say - if it were me just discovering today that I had not been told my baby lived, I would absolutely sue. A terrible wrong was done and it's plain astonishing that the doctor does not see it. xoDonna

[Earth Mother 2 Angels]

((((((Donna))))))

Please start a new thread about your most recent blog post, so we can discuss that topic!

I just want to thank you for keeping my brain working and thinking and processing. You always have such thought provoking topics.

Love & Light,

Rose