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Perinatal Hospice Programs
March 13, 2007 3:29 PM Subscribe

Living With a Dying Baby. "Families can choreograph their child’s very brief life with their family . . . Sometimes they may have a matter of minutes, so they decide beforehand who can hold the baby, who will cut the umbilical cord, who will hold the baby when you know he is going to die."
posted by brain_drain (66 comments total) 5 users marked this as a favorite

Warning: incredibly sad stuff.
posted by brain_drain at 3:30 PM on March 13, 2007

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posted by aliasless at 3:40 PM on March 13, 2007

I can't get past the words "perinatal hospice".
posted by tristeza at 3:46 PM on March 13, 2007 [1 favorite]

It's good to know there's stuff out there to help people in such a hopeless situation.

That being said, I feel kind of sick.
posted by The Power Nap at 3:48 PM on March 13, 2007

Is a very cool article.

Shame it's in the New York Times, and that link will expire in short order.
posted by JHarris at 3:49 PM on March 13, 2007

Perinatal hospice: A gift of time.
posted by ericb at 3:51 PM on March 13, 2007

Fucking hell.
posted by Cyrano at 3:53 PM on March 13, 2007

Shame it's in the New York Times, and that link will expire in short order.

Using the New York Times Link Generator, this link resulted -- thus likely to be available later.
posted by ericb at 3:53 PM on March 13, 2007 [2 favorites]

I read it this morning and was super impressed that these sorts of 'human interest' stories were being written and published.
posted by lilithim at 3:59 PM on March 13, 2007

I find these words so haunting: "who will hold the baby when you know he is going to die"
posted by Brainy at 3:59 PM on March 13, 2007

Oh man, I was doing ok until this part near the end "They want to know, they said, that she was once in places that mean something to them, like the cold forests of northern Minnesota where Mr. Kilibarda grew up and where they recently took her."

For most families those memories are so precious. I think it's a wonderful way to help those families through something that is just unimaginably heartbreaking.
posted by Salmonberry at 4:36 PM on March 13, 2007

briank: Doctors who feel that human suffering, even the death of a newborn, is a waste of their time really should go find another career. Like shit-shoveling.

I disagree. There's a lot of division of labor in medicine. Doctors who feel that this particular problem, heart-rending though it is, is not worth their highly educated, high-skilled time can put themselves to use somewhere else within the field of medicine, perhaps doing something to save lives.

Your statement appears to make the judgment that, if someone's reaction to this perinatal hospice stuff -- ultimately an incredibly narrow slice of human and medical experience -- is not identical to yours, they're some kind of monster. I don't think that's accurate.

It should be possible to be affected by the tragic scenes described in the NYT piece without tyrannically demanding everyone else feels the same.

(Let me be clear that I think this is a good FPP and an emotionally arresting story.)
posted by grobstein at 4:44 PM on March 13, 2007 [2 favorites]

"who will hold the baby when you know he is going to die"

My son died 25 hours after he was born and I was too angry, too horrified by what had happened to hold him while he was still alive. My ex-husband went to the nursery and held him. When the nurses offered to take his picture, I said "No." Then he died.

My mother, 2000 miles away, had called several times during the three days I was in labor. When she heard her first grandchild was not expected to live, she took the first plane to California, but arrived too late. she talked to the nurses and they brought his little body into my room. She and then I held him. I was glad she had insisted.
posted by Secret Life of Gravy at 4:47 PM on March 13, 2007 [14 favorites]

I cannot fathom delivering a baby you know will die. There is a tremendous kind of bravery exhibited by those who choose to do so.
posted by Ambrosia Voyeur at 5:05 PM on March 13, 2007

My girlfriend and I were talking this weekend about how hypersensitive we've become since our daughter was born. The slightest hint that a child might be suffering, even in fiction, is enough to make us seriously uneasy. I couldn't even read the first sentence of the FPP without feeling choked up. I'm sure it's a beautiful article, but I don't think I can read it.
posted by lekvar at 5:06 PM on March 13, 2007

A co-worker recently went through the experience of losing a new baby to genetic and untreatable heart defects. Though they knew in advance that he would not survive, I can't imagine how hard this must be to face. Anything that helps people cope through a loss like this is entirely worthwhile.

This isn't a contest, obviously, but I wanted to mention that there's something even worse: my sister's first daughter died from congenital heart defects that were not discovered until 24 hours after she was born. She and her husband had one full day believing they had a beautiful, healthy daughter -- and then six more days waiting for her to die.

It was a long, long time ago, and she has two beautiful kids now, but I'm gonna go find a corner and cry a bit.
posted by davejay at 5:12 PM on March 13, 2007

On the flip side, my older brother's seemingly healthy 24-year-old only daughter suddenly & shockingly collapsed from an amniotic embolism while in the hospital preparing to give birth to her first and only child a few years ago. He and his wife had been just besides themselves with joy, and it all changed in what seemed like milliseconds. Over a period of time, they had to stand by and idly watch as the doctors kept my niece's body alive enough to deliver a healthy baby girl before taking her off of life support. The father of the baby has since remarried and I believe he's been planning to move out of state. I hear that my sister-in-law has developed an obsessive attachment to the little girl, though. It breaks my heart, as it seems like she's a shell of herself now. From what I hear, the only thing she lives for is the baby... and it's not hers to live for. SO sad.
posted by miss lynnster at 5:27 PM on March 13, 2007 [1 favorite]

This thread is pretty freaking sad. :(
posted by miss lynnster at 5:30 PM on March 13, 2007

My girlfriend and I were talking this weekend about how hypersensitive we've become since our daughter was born. The slightest hint that a child might be suffering, even in fiction, is enough to make us seriously uneasy.

You're not alone. At my house we call it the "Law and Order Effect" since we first noticed a week or so after our son came home and I burst into tears and fled the room while watching an episode of L&O that I had seen a half dozen times before.

Its the strangest thing, the thing I was least expecting about becoming a parent.
posted by anastasiav at 5:43 PM on March 13, 2007

Ditto what lekvar and anastiav said. It is a strange and unexpected effect.
I couldn't bring myself to read the link, but I'm glad there is help for those parents.
posted by bashos_frog at 5:59 PM on March 13, 2007

“....if someone's reaction to this perinatal hospice stuff -- ultimately an incredibly narrow slice of human and medical experience -- is not identical to yours, they're some kind of monster.”

I don’t know anything about medicine, but I speculate it’s similar to investigative work. I understand homicide detectives must compartmentalize their feelings sometimes in chasing something down. You have to be a machine sometimes just to function.

I don’t know that I’d be able to stand bringing a child to term knowing it would die. No judgment there. I can handle a great deal and wide variety of stress. Just don’t know if this particular sort wouldn’t tear me up beyond fixing. Some people prefer going through it to having an abortion though. Tough call.

I’m gonna go play with my kids now.
posted by Smedleyman at 6:01 PM on March 13, 2007

Doctors who feel that human suffering, even the death of a newborn, is a waste of their time really should go find another career. Like shit-shoveling.

You read this article and it makes you sad. Now imagine dealing with this sort of stuff personally, every day. Besides having several other patients/expecting mothers to take care of. Try it sometimes yourself, I would not be surprised if you chose shit-shoveling instead.
posted by c13 at 6:06 PM on March 13, 2007

bashos_frog writes "Ditto what lekvar and anastiav said. It is a strange and unexpected effect.
"I couldn't bring myself to read the link, but I'm glad there is help for those parents."

Fourthed. I have no idea what's going on in the news unless I read it on Metafilter, because I really just cannot watch or read the "news" these days. Becoming a parent is like having every nerve exposed.
posted by peep at 6:13 PM on March 13, 2007

Those of you who want to take issue with my assertion might do well to read the part of the article where the writer explains that doctors feel that dealing with people who will deliver soon-to-die babies is a "waste of their time", not "a situation they have had to harden themselves to."

It is one thing to have to learn to deal responsibly with human suffering and to have to develop a tough skin to deal with difficult circumstances on a regular basis. It is another to have total disregard for suffering to the extent that one is quick to consider consoling patients for their loss "a waste of time".

The arrogance of physicians is nothing new, nor, unfortunately surprising. The defense of such callous and self-centered behavior is disappointing.
posted by briank at 6:24 PM on March 13, 2007

I dunno, if the alternative use of their time is helping to ensure that babies who have a chance at more than a few days of life are given the best possible care, I can see how they'd consider it a waste of time to spend a great deal of energy on hopeless, but very complicated, cases. It's a sort of triage, I suppose.
posted by jacquilynne at 6:33 PM on March 13, 2007 [2 favorites]

it's a pretty new thing that such profound attachment to newborns occurs regularly. I am not saying it is wrong mind you, just an observation. I wonder if the attachment is greater in situations where it is known beforehand that the child will not survive. For whom is the grief, the child or the parents. Whomever, it is good there is support for those in need, now, if we could broaden that a bit.
posted by edgeways at 6:52 PM on March 13, 2007

This is my first MetaFilter Post. My wife and I are long time readers. We are also friends and neighbors of the Newels mentioned in the article. Our youngest is the same age as their son. We watched him the day Joseph arrived. My wife is currently out with Janell offering support. This whole thing happened a few months ago and they are just now coming to terms with it. The article, tough as is is, has offered a bit of closure. One thing that I was pleasantly surprised to hear was how genuinely kind, compassionate and human the NYT reporter and photographer were.

Before we had kids, my wife worked as a social worker with hospice. She said that, for her, the sadest cases were young parents with small children. The whole idea of prenatal hospice is unbeliveably sad to her. I'm glad that some people have the compassion to do this.

Last November they had a "Baptism of Intent", which was basically a baptisim for Joseph once they realized he had no chance. The parents are not overly religious and this had no creepy pro-life undertones. It was a moving ritual and a chance for a lot of their loved ones to gather. They said they wanted to be the best parents they could for the short amount of time they would have him.

When we first found out about their troubled pregnancy, I was stumbling on words to say to them. Mike said something to the effect of "there are no words for this, and there shouldn't be". It was hard to hear their stories, but they needed to tell them and they needed someone to listen. I guess what I'm saying is that if you know someone in a situation like this, go out of your way to listen to them.

-Bob
posted by bobbarnesmn at 7:25 PM on March 13, 2007 [11 favorites]

Thanks for sharing that, Bob.
posted by miss lynnster at 7:29 PM on March 13, 2007

I thought I wouldn't be able to read it, but I did, and I'm glad I did; it was so sad, but handled sensitively, and I so very much feel for the families interviewed.

I'm of course a raw nerve myself (two small boys and a baby in progress) like other people upthread have mentioned, in a way I never knew I'd be; but ever since I was pregnant with my first it's so hard to read about children in danger or watch anything violent/heartbreaking/scary like that. Becoming a parent is a leap of faith before you even realize it, hoping that your children will live and be healthy and nothing bad will happen to them, because your heart is so invested - and discovering that just your love for them is no guarantee everything will be all right.
posted by Melinika at 7:41 PM on March 13, 2007

this article just broke my heart... It's such a profoundly sad topic that I can't say anything in response that wouldn't seem trite. I'm going in the other room now to go stare at my sleeping toddler.
posted by jonson at 7:47 PM on March 13, 2007

With the encouragement of hospice staff and his wife, Mr. Newell took the one chance he would have to dress Joseph.

As a father, that was the bit that really got to me. Bob, thanks for adding a little more depth to what was already an intensely personal article. Your friends deserve a lot of praise for sharing their story; they have helped more people than they know. From time to time I am involved in cases like this at the hospital where I work (although we don't have a formal perinatal hospice program) and it is good to see these things from another perspective.
posted by TedW at 7:59 PM on March 13, 2007

What a wonderful article. Thank you for sharing it, brain_drain. Bob, thank you for sharing your piece of this story. As a mother, my heart aches for these families. As a former hospice worker, I am thrilled to see the NYT publish this.

I worked in a hospice for two years as an administrative assistant. It was one of the most profound experiences of my life. For me and many of my former colleagues, hospice work isn't work... it's a vocation. This explains to me why the author of the piece didn't experience a lot if ideology during her interviews with hospice workers. I didn't experience it either -- my colleagues and I agreed that to be surrounded by fragility of life only makes one embrace it more.

It has been said that hospice workers are "midwives to the dying," it is especially true in this piece.

.
posted by luminous phenomena at 8:42 PM on March 13, 2007 [1 favorite]

Great article, great comments, thank you.
.
posted by Alvy Ampersand at 9:06 PM on March 13, 2007

"Those of you who want to take issue with my assertion..."

For my part - no issue, just an observation.
There's no defense to the scenario as you've outlined it. It's hard to for me to imagine that such is the case. Perhaps some people/doctors are that heartless. But it's easy to have misunderstandings in time of great emotion. Lots of cops engage in gallows humor for example. They might not know that they're speaking to - at some time - someone who is emotionally tied to the situation. Someone concerned with saving lives might indeed consider time not spent toward that end a waste of time and talent. It's not a very humane POV, but there is a difference between dire physical and dire emotional need. Doctors specialize in the former, the latter is dependent on their nature and whatever secondary training they've gotten. Again - doesn't excuse what you're talking about.
posted by Smedleyman at 9:24 PM on March 13, 2007

I could have read the article but seeing the picture of the baby made it impossible to go on.
posted by semmi at 9:44 PM on March 13, 2007

When we were going through our 32 hours of labour, the thought crossed my mind..."do I get to / have to hold my dead daughter?". The whole thing freaked me out bad. Luckily, all ended in a caesarian and a wonderful baby daughter that is as healthy and active as can be. Having gone through that though, those less fortunate have my pity and sympathy.
posted by Kickstart70 at 10:43 PM on March 13, 2007

I've never had a child, but I've had a miscarriage and compared to these parents, I feel lucky.

My heart goes out to them. (Almost literally, after reading that article, I fear it might fall right out of my chest.)
posted by grapefruitmoon at 11:01 PM on March 13, 2007

tehloki, while not going as far as you, I see your point. Many of the syndromes associated with congenital defects will put these infants in terrible, awful pain. I can sympathize with the notion of how it's a waste of a doctor's time to send parents down this road which is likely to end in great suffering for all involved. It's well known that many many strong relationships end after the death of a child. Also, a physician can't lower her standard of care simply because of the high likelihood of mortality, thus likely spending even more time and resources on delivering a child doomed to die very soon in terrible pain. I could easily see the obstetrician's frustration.
posted by nonreflectiveobject at 2:22 AM on March 14, 2007

Also, briank: "The arrogance of physicians is nothing new, nor, unfortunately surprising. The defense of such callous and self-centered behavior is disappointing."

Is your experience of medicine House M.D.? Seriously, medicine is a profession which is constantly undermined to an absurd degree. Between amateur WebMD diagnoses, pharmaceutical 'branding' ads and frivolous malpractice lawsuits, physicians have to deal with a lot of disdain from some patients. This has a tendency to make them more pragmatic in dealing with the difficult, and more appreciate to the cooperative. Ever try being nice to your doctor?
posted by nonreflectiveobject at 2:41 AM on March 14, 2007

appreciative, that is.
posted by nonreflectiveobject at 2:42 AM on March 14, 2007

The amount of selfishness present in wanting to give birth to a fetus which will not survive more than a few days of infanthood, likely in great pain, is astounding. This is one of the few situations where an abortion is by no means morally questionable.

Though its time is brief and sad, the child gives the parents an incredible gift -- a deep understanding of the fragility and preciousness of life. I can only hope the world becomes a little better because of it.
posted by Meridian at 4:15 AM on March 14, 2007

.

and rememberances of Shane, my lost nephew.
posted by michswiss at 5:46 AM on March 14, 2007

...will not survive more than a few days of infanthood, likely in great pain...

While I agree with your point that these are situations where abortion is a good option (and it angered me to see that anti-abortion groups are trying to weasel their way into the perinatal hospice movement, perhaps crippling it from the beginning) the vast majority of those who care for very ill infants are quite aware that they can feel pain and make it a point to see that narcotics and other drugs to ease suffering are administered. A major emphasis of the hospice movement as a whole is to minimize the patient's suffering as opposed to keeping them alive at all costs. In other instances, with severe brain abormalities, the baby might not be able to feel pain. That is not to say that these babies never suffer, but that suffering is minimized as much as possible.
posted by TedW at 5:49 AM on March 14, 2007

i agree with tehloki so completely. why would anybody who knew in advance about such a defect bring a child to term? this is what saddened me most about the article, and made it so difficult for me to read. can somebody, anybody, posit some sort of justification?

i don't mean to be callous. i just honestly can't understand why a parent would bring a child like this into this world - causing unnecessary pain and suffering to everyone involved - when there is the option to euthanize? are these people so incredibly anti-choice that abortion is unacceptable even in this extreme case? it just totally baffles me, and, i am ashamed to admit, puts a damper on my sympathy.
posted by timory at 6:28 AM on March 14, 2007 [1 favorite]

don't mean to be callous. i just honestly can't understand why a parent would bring a child like this into this world - causing unnecessary pain and suffering to everyone involved - when there is the option to euthanize?

"Euthanize"is, perhaps, a misleading term here. At the stage of pregnancy where many of these disorders are positively diagnosed, the manner of terminating the pregnancy would generally be a "Partial Birth" procedure.

The child dies either way. The parents suffer and grieve either way.

Would it be worse to allow the child to be born naturally and die naturally, knowing(as much as an infant can, anyway)that he is dying in the arms of parents who love him, and are grateful to have even just a few moments with him?

Or, would it be worse to jam scissors into the child's skull and vacuum out his brains while he's still alive?
posted by spirit72 at 6:44 AM on March 14, 2007

.
posted by LordSludge at 6:46 AM on March 14, 2007

spirit72: that does put things in perspective, but in this case they knew at 12 weeks. that's another 24 weeks of torture for everybody. the doctors said, at 12 weeks, that there would be no chance of survival. this isn't a particularly early stage, but it isn't late enough for partial birth, either.
posted by timory at 7:06 AM on March 14, 2007

I'm on a prayer request email list at the church I attend, and about once or twice a week, I receive an detailed update on the status of little Sarah Grace, who is three months old and was born with a major heart defect. She has been through the wringer and, despite the best efforts of her surgeons, doctors and nurses, probably not going to make it. It's excruciating to read, a vast and terrible sadness that is simply too big wrap my mind around. People you love can be taken from you at any time. Take nothing for granted, and hug your kids every chance you get.
posted by Scoo at 7:44 AM on March 14, 2007

I was holding it together until I read Bob's comment, and now the tears are flowing. Thank you, Bob, for sharing. Wish my kids were home so I could give them a weird-Mom's-crying hug.
posted by Sweetie Darling at 8:45 AM on March 14, 2007

I'm not advocating willy-nilly partial-birth grisly fetus-maiming abortions, just... if you know early enough in the term, please spare the child and likely yourself great mental anguish.
posted by tehloki at 9:09 AM on March 14, 2007

tehloki, I haven't been through anything even close to this decision making process, but I can think of 2 reasons why parents might decide to carry the baby to term. Parents may want as much time as they can have, and with the presence of caring medical professionals and narcotics to ease the baby's pain, 3 months might be worth it to them. And what if they get 3 years? I think some parents aren't willing to give up that chance for a miracle.

Also, I've read first-hand accounts of women who give birth to still-born babies and find it a very spiritually moving experience. With help like that of the hospice workers mentioned in the article, I can imagine that it becomes part of their healing process.
posted by juliplease at 9:50 AM on March 14, 2007

are these people so incredibly anti-choice that abortion is unacceptable even in this extreme case?

If you read the article you will find that both couples are pro-choice.
posted by purplemonkie at 10:43 AM on March 14, 2007

I do see this as selfish, but grief does have to be dealt with somehow. It's good these programs are in place. And having a child is an inherently selfish act to me anyway, so this is not terribly surprising, although sad.
posted by agregoli at 10:51 AM on March 14, 2007

I concour with some sentiments expressed already. My daughter was born this past October (our first) and I can no longer abide the thought of a child suffering, let alone the reality of it. That being said, despite the profound sadness at the core of this story, I take great solace in knowing that there's facilities like this for those that need them.
posted by joseph_elmhurst at 11:24 AM on March 14, 2007

This is a sad article and I feel sorry for the people (although I agree that their situation isn't without moral nuances). But what's with this "now I'm a parent, I can't bear to to read this stuff" thing?

I recently became a parent and it has had no bearing at all on my ability to watch atrocities on the news, dramas where kids get hurt, etc. Does this make me unbearably callous?
posted by rhymer at 12:03 PM on March 14, 2007

Some people who become parents want to show that they've evolved as people or something? I have no idea, it seems a strange form of braggery to exclaim at how sensitive you are now.
posted by agregoli at 12:17 PM on March 14, 2007

Thanks agregoli. As a good Englishman with a stiff upper lip, the last time I cried was when my dog died ten years ago. I shed a single tear.

I now realise it's not that I'm insensitive, it's that others are emotionally incontinent.
posted by rhymer at 12:24 PM on March 14, 2007 [1 favorite]

rhymer, my ability to watch the evening news or read stories about TB in Haiti or whatever has not been lessened since my kid was born, I've just found myself to have more intense emotional responses to these things than I did before. I haven't asked other new parents I know whether or not it's been the same with them, but it was interesting to read in this thread that my experience isn't unprecedented. Your results may vary, I suppose.

agregoli, you're right - I'm a big show off. Thanks for bringing this thread back to the level of discourse I've come to expect from the Internet.
posted by joseph_elmhurst at 12:30 PM on March 14, 2007

Snort. That's a fantastic phrase! =)
posted by agregoli at 12:33 PM on March 14, 2007

I wish I lived back in the 1950s, before people talked about their feelings.
posted by rhymer at 12:56 PM on March 14, 2007

I wish you lived in the 1950's too.
posted by tehloki at 1:50 PM on March 14, 2007

are these people so incredibly anti-choice that abortion is unacceptable even in this extreme case? it just totally baffles me, and, i am ashamed to admit, puts a damper on my sympathy.

Are you so pro-abortion that birth is unacceptable whenever there is a medical reason to abort? Have you so lost sight of the concept of "choice" that you lose sympathy with someone because of politics?
posted by Snyder at 2:57 PM on March 14, 2007 [1 favorite]

snyder: actually, depending on the situation - yes. it's not politics at all, it's ethics.
posted by timory at 3:23 PM on March 14, 2007

Another point to consider: in some cases carrying a baby to term would give the mother a greater chance at conceiving and carrying a healthy baby the next time, especially in the cases of a problem pregnancy and (to use the dreaded phrase) "advanced maternal age" (i.e. >35)
posted by bobbarnesmn at 7:52 AM on March 15, 2007

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