Friday, April 10, 2009

Baby stays awake, saves her own life

All of you parents out there, perhaps mothers especially, have been through nights when a baby simply will not go to sleep. Fuss, fuss, fuss. Or sometimes, happily wide awake...until you lay him down. Youngest Daughter started out alert in the delivery room and has continued to be alert since then, pretty much non-stop. And she was a night owl. At 3 a.m., she would wake up for a feeding, and no matter how low I tried to keep the lights, I'd see those bright, big eyes looking all around. Head turning. The world was just so interesting. Why would anybody want to sleep? Ever?

Well, now there's a disturbing story out of Canada with a happy ending (or a happy plateau for the moment), because a baby wouldn't go to sleep.

Two-month-old Kaylee Wallace has Joubert Syndrome, which is causing sleep apnea. She breathes fine on her own when awake but is ventilator dependent (to some extent or other) while asleep. Her parents had decided to "let her die" and donate her heart to another child using the non-heart-beating donor protocol. I've written about this protocol here. At Kaylee's hospital, they planned to wait five minutes after her heart stopped before declaring her dead, but in some places where they use this protocol they wait only 75 seconds before declaring an infant dead and taking his organs.

So, in a macabre death-watch, they carted Kaylee off to the operating room around a time when they expected her to go to sleep, took her off her ventilator, and...waited for her to fall asleep and die, or "die"--stop breathing, let her heartbeat stop for five minutes, refuse to revive her, and then harvest her heart for another child. But it was just one of those darned things: Kaylee was too interested in living. Maybe she thought the operating room looked cool. She wasn't ready to fall asleep. No, no, no. Who knows what they tried. It boggles the mind. Did somebody snuggle her to try to make her comfy, so she would fall asleep and die, so they could get her heart? I don't know. It's hard to imagine people participating in such a process. But she wouldn't play ball. The story says the process was supposed to go through if she died in two hours. So I'm guessing she stayed awake for two hours, bless her little heart. (Literally.) Just went on breathing.

The hospital says that Kaylee is "no longer a candidate" to be an organ donor, but that this determination is "subject to change." I assume that at a minimum this means they aren't just going to try this little dance of death over and over again, hoping to catch Kaylee sleeping. But it's unclear what would make her a candidate once again.

Meanwhile, her parents are "scared" by the fact that she didn't die! You see, they've made up their minds that Kaylee is dying (though this is questionable), and now they consider that if she dies without having her organs harvested, they have also "lost" another child who might have received her heart. Says her father, "If she's going to die, we got to keep trying. I want my child to pass on because she can't survive, and to save that child. This is our first child and the dreams of the grandparents, the hopes of the future...have been dashed, yet the hopes of another child doing the same thing is what we live on for here." Get that? What they are now living for is the hope that their baby may die in such a way that her organs can be harvested. And, "That's what scares us right now," Wallace said Tuesday, his voice cracking. "Losing our daughter's OK, I understand that, but I don't want to lose two."

I wonder what they will tell Kaylee if she lives.


Todd McKimmey said...

I wonder what they will tell Kaylee if she lives.

I'm going to figure "why, no, honey, you can't use the internet today either" will be one in the top 10.

william luse said...

I don't get it. Does having this "syndrome" mean that she can't live? I mean that the condition will never relent? Even so, this is not a girl who is literally dying except when she goes to sleep, and apparently even then not all the time. That doesn't fit my understanding of a terminal condition. It sounds as if they want her to die of sudden infant death syndrome. Most parents would save their child from such a death if they could. If she stays on the ventilator at night, will her lungs one day be strong enough so that she won't need it? Even if not, this sounds more like refusing to give a severe asthmatic his breathalyzer should he wake up gasping for air because you're tired of having to do it every night.

alaiyo said...

Here's the link to an official Joubert Syndrome site:

And here are two of the FAQs from that site that give vital information to understand that what these parents and doctors are doing is trying to murder this child because she is physically handicapped and may be mentally retarded: she is NOT "dying" any more than are the rest of us:

What is the prognosis for Joubert Syndrome?
While global developmental delay is frequent, health and growth are usually not severely affected. Commonly there is a degree of mild or moderate retardation. Severe mental retardation is uncommon. There are a few cases of affected individuals with normal intelligence or learning abilities.

What is the treatment for Joubert Syndrome?
Infant stimulation, physical therapy, occupational therapy, and speech therapy are valuable. Somewhat less traditional therapies such as auditory training, sensory integration, horseback therapy and water therapy have also been found to be very beneficial. Infants with abnormal breathing should have apnea monitoring.

I keep thinking things have gotten so bad that I can't be shocked any longer -- and then I am.

William Luse said...

Thanks, Beth. This tends to confirm my suspicions.

MamaT said...

Oh my sweet Jesus, as my grandmother would say.

This is why vengeance is the Lord's and not mine, because I'd be waiting for those parents to fall asleep in the waiting room of the hospital.......

Whoo. I can't even go there, it makes me so very ANGRY.

And sad.

They don't want her because she is not perfect and their hopes are dashed? We'd take her around here.

I don't understand why they can't just give her to any of the thousands of people who would be glad to deal with her medical issues.

But no, it has to be cloaked in "we want to save someone else" so they can wrap themselves in a mantle of "righteousness".

Oh, boy.

Lydia McGrew said...

It's my opinion that somebody, perhaps a doctor or nurse, or more than one, has told these parents that their child cannot live. I can't help wondering how long they'll continue to believe that. After all, she's lived to be two months old, so "cannot live" becomes kind of a strange and undefined idea.

But once they have got it into their heads that she cannot survive, at that point what I consider to be a pseudo-religion of organ donation comes into play. In this religion, the child's death does not have meaning unless she can be harvested. Her death will be wasted if she can't be harvested. Organ harvesting becomes an imperative to give her death a meaning. That fits with what I know of the atmosphere that surrounds organ donation in the west, and it also squares with what the father says.

alaiyo said...

I hope you are right, Lydia, because if not, it's the worst possible thing I can (so far) imagine. Perhaps this having gotten into the news will bring some families with JS children into their lives to reassure them and help through the first scary months of Kaylee's life.


Lydia McGrew said...

It seems to me pretty awful even on my interpretation, though, Beth. _Someone_ has rushed to declare a disabled child "dying," and it now seems to me even possible that the parents have internalized this to such an extent that they will continue to believe it indefinitely. In one of the news stories the mother says that the child "dies" every night when she sleeps. There's this post-modern feeling to the whole thing, as though the parents literally believe she's dead every night. Moreover, in this context they've apparently transferred their emotional attachment to another child--probably proximately the child they "picked" to receive Kaylee's heart (though actually it wouldn't be up to them), but also more generally _some_ other hypothetical child who might be saved by Kaylee's dying in the "right" way--i.e., in such a setting that her heart could be harvested. The quotes from the father indicate to me that he has in a weird sense de-bonded from Kaylee and re-bonded with a "child that could be saved" for whom parental dreams might still be fulfilled. Hence the scarcely hidden frustration with the hospital over not trying again and again to catch Kaylee sleeping. (A commentator at Wesley Smith's blog says the father has made even more statements to the media indicating annoyance with the hospital for not continuing to try for the organ transplant.)

Clare said...

During the question and answer session following his and Peter Singer's debate, Fr. Neuhaus:

asked Prof. Singer what, then, should be the cut-off age at which parents would no longer be free to kill their children. One year? "Oh," he said, "I should think it would be somewhat short of one year. But my point is that it's not for me or anyone else to say. It should be up to the parents." He added that it is a decision that parents should make in consultation with their doctor.

In the middle of a conversation, a person says something so striking that time seems to stop and an entire scenario unfolds in your mind. That is what happened to me at that point. It went something like this:

Mike and Elizabeth had one child, three-year-old Elizabeth, and had really hoped for a boy this time, but decided to go ahead with the pregnancy when the tests indicated another girl. They named her Anne, and they loved her very much. Their best friends, Bob and Debby, lived only a few houses away, and they all agreed that such an adorable and happy baby had never before been seen.

It was not until about the seventh month that Elizabeth and Mike noticed the odd twitching in Anne's left leg and arm, and the way she refused to look them in the eye. She spent hours in the corner twirling her little yellow plastic duck, increasingly oblivious to everything and everyone around her. The doctor referred them to a specialist who spoke of a neurological problem and exploratory surgery. Even more troubling were the early signs of autism. They were told that there are wonderful programs now, most of them paid for by the state. With the help of therapists ten hours a day, there was a better than 50-50 chance that at age five or so Anne would be almost like other children. Although the neurological problem might leave her with the odd quirk and apparent vacancy of mind from time to time.

That's when Elizabeth began to think, very tentatively at first, that they should send her back. When she finally got up nerve enough to suggest it to Mike, he was appalled. What do you mean send her back? You mean we should kill her? Not at all, Elizabeth explained, the law is very clear. You just sign some papers saying that you have decided it is the best thing for her, and then they gently put her to sleep. It's the merciful thing to do, Mike. She would have never had a really normal life. (By this time, she was beginning to talk about Anne in the past tense.) Anyway, there is my job to think about. I couldn't have been supervising all that therapy for five years, and you're on the road half the time. And next time we can have the boy that we wanted. Knowing that the burden of caring for Anne would fall unequally on Elizabeth, and loving Elizabeth very much, Mike finally relented.

When she told Debby that they had decided to send Anne back, Debby was horrified. But you can't do that, she said. She's your baby, Elizabeth. You can't kill your own baby. It's one thing to have an abortion, but she's been part of your family, part of your life, for seven months. You can't just kill her. Elizabeth protested that they would not be doing it, that it's done in the hospital, and anyway their doctor agreed with them. The doctor also explained how her body parts could save the lives of other children, so it isn't as though she had lived for nothing. Moreover, Anne wasn't really part of the family. She didn't really relate to anybody, and her autism would probably have gotten worse. It would be cruel to have forced her to live a life that was not worth living. Debby noted the past tense and knew the decision had been made. It was a painful conversation. That night Debby and Bob talked for a long time. They agreed they had lost their best friends; they would not be able to have Elizabeth and Mike over any more.

Elizabeth's mother, Mary, told her she would never speak to her again. Grandmothers often are that way. Henry said, Listen, honey, you'll get over it. Anne is their baby, after all, not ours. We have four other grandchildren, and Elizabeth and Mike can have another one who doesn't have all those problems. It's not as though they're doing something criminal. It's legal, and more and more people are doing it. Remember the Schmidt baby, and he was almost two years old. I know how you feel, honey, and I don't like it either, but I don't see how we can impose our judgment on Elizabeth and Mike. It's their baby, after all. And you know she wouldn't have had a happy life. Maybe this is the best thing.

Mary was not convinced; not then, not ever. After a while, she did speak to Elizabeth again, but it was never the same. She remembered how Anne, then less than a month old, had giggled and let out that funny yelp when Father Rittle baptized her, and how they used to recall that, and laugh again. Mary took down from the mantle the Christmas photo of Elizabeth and Mike with little Elizabeth and littler Anne, and put it away in a drawer. Every once in a while, when she was alone, she would open the drawer to look at it, and to remember. She remembered Anne, and she remembered the day that Henry told her that they had sent her back. Elizabeth explained to her father that it wasn't so bad after all. The doctor was waiting for them at the hospital, and there was this really nice room where she and Mike could say their goodbyes, and then a very understanding nurse took Anne from her arms. Don't be embarrassed to cry, she said. Sometimes things just don't work out the way we hoped. Then Elizabeth knew that they had decided to do the right thing. It was with a smile of regret, but mainly of enormous relief, that she watched the nurse carry the poor thing off to another part of the hospital where they put down the babies.... - "A Curious Encounter with a Philosopher from Nowhere" / First Things / February, 2002.

Lydia McGrew said...

I remember reading that when Fr. Neuhaus wrote it, Clare. Good connection.

Lydia McGrew said...

By the way, Todd's comment is excellent. Right. Exactly.

alaiyo said...

Oh, yes, it's horrific in any interpretation, Lydia. I guess I have a bit more sympathy with someone's being deceived than with knowingly seeking to murder a child they know is really not dying . . . Good story from Father Neuhaus; thanks for sharing that, Clare. It also reminds me of the novel _The Giver_ -- one of a set of twins is always "sent away" as well as any child who doesn't fit the perfect mold demanded of the community . . .

Pen said...

So much of this story is disturbing. Poor Kaylee. I want to take hold of her parents and shake some sense into them!

Madeleine said...

I hear you Pen. I think it is symptomatic of the attitude towards children as these things you add to your life when convenient, up there with the picket fence, first home and flash car. Further, if you can discard them pre-birth if they are imperfect or you change your mind about them or they are the wrong type or the timing is inconvenient, then we shouldn't be surprised when this happens post-birth.

Lydia McGrew said...

I think there's a lot of truth in the concerns about the child's not being "perfect," but my strong guess is that the prejudice against the child lay first somewhere in the Canadian healthcare system--in someone who told the parents the child was dying--and came thence to the parents.

Moreover, I think Christians and conservatives really must reckon with what I have called the pseudo-religion of organ donation. It's very powerful. Have you ever read an organ-donation zealot? You know how they talk? "Last year, x number of usable organs were buried." Isn't that sweet? So if your beloved family member dies, you have a funeral and bury him, the organ-donation polemicist sees that as this terrible waste, because you just buried a few more "usable organs." This has obviously been pumped into these parents, and that's no small part of the story of how they got so murderously inclined towards their baby daughter. It's gotta be full-steam ahead for being sure that, God forbid, we don't "waste" her organs which could be harvested.

One of the deeply disturbing things in this story is the failure to speak accurately about a disabled child, the tendency to speak of the child as dying when she is not and to act accordingly. The other deeply disturbing thing in this story is the near-panic feeling the parents have over the possibility that she will die without being harvested and hence that her death will be meaningless.