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May 8, 2005

Charlotte Wyatt: Two steps forward, one step back

Topics: International

Charlotte is continuing to get stronger, but today there was another set-back from the hospital. Though she spends most of the time in her oxygen box, she had been slowly introduced to nasel cannula for the past few weeks; going up to two hours a day, split up into two sessions.

Darren and Debbie loved this new advancement-- she was more alert when she was on them, and certainly easier to hold and stimulate. But today they found out the nasal prong machine had been removed, and on inquiring, that the hospital had decided to stop giving her time on it. No reason was given, simply "it hadn't been a success".

But why not a success? She did so well on them!

They may mean well, but right now it is difficult to be anything like certain.
If the hospital believes your baby does not deserve to live, will that affect their decision making?

When will there be any accountablity?

Source: SaveCharlotte.com

Posted by joshua at May 8, 2005 5:27 PM


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Comments

Got an e-mail from Hannah Maxson giving me a snail mail address to send money for Charlotte.

P.O. Box 4627
Buffalo, NY 14240-9915

Make the checks out to Hannah Maxson and put in the acct no. 9838751221 and Charlotte Wyatt Medical Fund.

Y'all send money, now--it will be a big jewel in your heavenly crown.

Posted by: mary et. al. at May 8, 2005 7:18 PM

Thank you, thank you for posting this Mary! I have sent my donation.

Joshua, thanks for posting the update here as well as on your site for Charlotte.

We are praying for you, for Hannah, for Darren, for Debbie for *Charlotte*! I am believing God will do the best for her!

Posted by: juleni at May 9, 2005 9:51 AM

The refusal to discuss the reasons for this with the parents bespeak a real contempt for the parents. I find it hard to imagine a similar thing arising in a hospital in the U.S., although it isn't impossible. One would think that a respectful inquiry would bring for the information. "What happened? In what way was it not a success? What was wrong?"

Heck, I can *make up* stuff that might be the problem and might be real. For example, they have been worried about her losing weight and being malnourished because she flails around so much and they can't give her enough calories to make up for what she's spending. Was she maybe losing weight while they did the out-of-box experiment? That could be a Devil's alternative--it's good for her to get more stimulation,b ut it might also cause weight loss in her condition. And so forth.

But they should _tell_ the parents. What harm could it do to tell them?

I have to wonder if someone at the hospital is ticked off and using this to get back at them. "They've been telling the whole world we have it in for their daughter while we're taking good care of her. The h*ll with them. We don't have to tell them anything." But if so, it's hard to know how to change that.

Posted by: Lydia at May 9, 2005 12:09 PM

Hi guys,

Glad to see some bloggers. Can I ask everyone again if they would sign up for the prayer warrior group, PLEASE! We have (central time) the hours from 11:00 to noon and 1:00 to 3:00 p.m. and 10:00 to 11:00 p.m. covered. That only leaves 20 more warriors left to find. Maggie if you see this, can you find any one there who would take the hours we will probably be asleep. Let's not leave Charlotte and family or any of the others alone with their enemies even for a minute.

Posted by: mary et. al. at May 9, 2005 2:20 PM

mary,
I will take 8-9 central time to pray.

Posted by: kay at May 9, 2005 3:55 PM

Thank you, Kay. That leaves 19 more warriors to go.

Posted by: mary et. al. at May 9, 2005 4:37 PM

Update: Tom has kindly taken the 10:00 to 11:00 p.m. Pacific time slot which I THINK is midnight to 1:00 a.m. central. That leaves 18 more warriors to go.

Posted by: mary et. al. at May 9, 2005 11:54 PM

Ill take 10pm-11. OK..

Josephine

Posted by: Chiarasmommy at May 10, 2005 6:31 AM

Is that central time, Josephine? You've got it, leaving 17 more warriors to go. Here's the schedule: Taken (central time) 11:00 to noon; 1:00 to 3:00 p.m; 8:00 to 11:00 p.m. and midnight to 1:00 a.m.

Posted by: mary et. al. at May 10, 2005 3:50 PM

Y'all--My family rarely give me time to do anything for an hour at a time, and certainly not in private or with a lot of concentration (like praying).

_But_ while this precludes being much of a prayer warrior (though I do pray for Charlotte and others in short bursts during the day and at night before sleeping), it surprisingly doesn't preclude blogging.

I now have finished and put up my Charlotte blog post for the conservative philosophy blog, Right Reason, to which I am a contributor. Don't expect too much. It is deliberately dry and measured in tone and doesn't say much that in fact I would say. More may come out in the comments thread. But it will at least make some intellectual-type conservatives (and, I'm sorry to say, liberals) aware of Charlotte. If nothing else, it may get some other people praying, as Christians do read Right Reason. The URL for Right Reason is

http://rightreason.ektopos.com

My post is at the top of the page as of a few minutes ago.

Posted by: Lydia at May 10, 2005 4:37 PM

Lydia,

That was an excellent post on Right Reason. You are right, there is little logic or consistancy to the ruling of Justice Hedley, unfortunately it isn't just limited to him. The basic intent of law seems to have migrated to the assumption that death is the preferred state of existence. You had a chilling line in that piece which speaks volumes: "The most important thing of all is to be sure that this child doesn’t live when it would be in her best interests to die..." Her best interests to die; what have we come to?

I hadn't heard of Right Reason before this but I liked what I saw -- new bookmark for me.

Posted by: Tom Spence at May 10, 2005 6:53 PM

Thanks, Tom: My husband suggested that I put that part about "her best interests to die" into italics to show that it was my summary of their attitude, not an exact quote of their words. If that was unclear, I want to clarify it here. However, if you click on the link to Justice Hedley's opinion, I think you'll see that it is not an unfair summary. He is indeed talking throughout about her "best interests" and implies that it indeed would be in her best interests to die under the circumstances envisaged. He just doesn't say it in quite those words. It was even clearer when they got the DNR put in originally last fall--all the talk about her unbearable life and such was truly chilling.

Posted by: Lydia at May 10, 2005 7:04 PM

I've revised the post slightly to make it even clearer that that is my paraphrase of what they are thinking, not an exact quote.

Posted by: Lydia at May 10, 2005 7:11 PM

Lydia,

I did, indeed, know that it was not a direct quote. Nevertheless, simply the fact that it *could* be mistaken for one is frightening.

Posted by: Tom Spence at May 10, 2005 7:13 PM

I've gotten some really horrific comments from our standard liberal commentators over there. Basically, they all seem to think Charlotte should be bumped off to save everyone money. One charming fellow said, "Her parents could have another child, they would forget her, and she would know nothing about it." Scary stuff.

Posted by: Lydia at May 11, 2005 10:17 AM

Lydia,

We used to have such people here until they got weeded out. Perhaps this Blog site is on to something. Sometimes it is really hard to have charity with such evil minded people.

Posted by: mary et. al. at May 11, 2005 12:47 PM

Lydia,

What is it with some people? They think that it is a reasonable and pursuasive argument to attack then dismiss anything which may have originated from a viewpoint which is to the right of their little world. Any references expressed or implied to eugenics, euthanasia, "culture of death" or concerns about right v. wrong are mocked as being "uneducated" and un-cool. It is like the worst of high-school clique mentality.

No matter, good is still good and evil is still evil.

Posted by: Tom Spence at May 11, 2005 12:49 PM

Y'all--I've run into an odd thing on my thread. It's small in a way but has damaged my credibility. One commentator claims to have come across an article (she hasn't yet given the source) claiming that Charlotte _doesn't_ have a DNR on her chart but is _only_ not going to be ventilated.

Now, I don't see practically how you could draw this distinction very well. What, are they going to let her stop breathing if that should happen and do nothing about it _but_ shock her heart when it stops too? It makes no sense, it contradicts _explicit_ statements by Charlotte's parents on their blog (that the judge *kept the DNR* in place). And it contradicts the direct statement by at least one UK regular news article I've found. I suspect it's just a confusion by some reporter.

If anyone can help me clear this up, figure out what this might be referring to, etc., I'd appreciate it.

Posted by: Lydia at May 12, 2005 4:20 PM

Lydia, it is a DNR order. You are right. Here is a quote:

"Passing the ruling Mr Hedley said: "I am quite clear that it would not be in Charlotte's best interests to die in the course of futile aggressive treatment."

He said that if she should stop breathing all treatment up to, but not including, intubation and ventilation, would be in Charlotte's best interests, "but nothing further"."


Nothing further, means ONLY anything UP TO ventilation, but NOTHING further. Nothing means nothing. Not ventilation, not shocking her heart, NOTHING. I.E. she will die.

The above quote is from the article here: http://news.bbc.co.uk/1/hi/england/hampshire/4466855.stm

By the way, the BBC broadcasters on all the videos posted at Charlotte's website say out loud as reporters "DNR Order". (Watch the videos if you have time.)

Wish I could say a lot more, but am limited for time. I will post one more follow up post, here.

Posted by: juleni at May 12, 2005 5:56 PM

Something that we should all know and keep in mind....the mistake so many have made, including Charlotte's doctors, is that we should be looking at her as a PREEMIE. Because many preemies have heart, lung or kidney problems. She is not unusual. What is wrong is not her, but the way the doctors have responded to her condition of being premature,etc. Could the problem lie in that hospital not being a baby or children's hospital? They are not used to seeing this, so much. In fact, they are a cancer and women's hospital. Perhaps they are thinking of Charlotte, like their cancer patients. They probably don't have good neonatalists there, who are used to working with preemies.

That is one reason why Debbie and Darren would LOVE TO HAVE ANY AND ALL STORIES FROM OTHER PARENTS OF PREMATURE BABIES WHO HAVE BEEN THROUGH THE SAME THINGS AS CHARLOTTE!

And...they are getting stories. I joined a preemies newsgroup, first telling them why I was joining and asking permission to join - to relate Charlotte's story to them and to ask them to send their stories of their babies like Charlotte, to CHarlotte's parents.

WCharlotte is just a pretty normal preemie - or at least not at all unusual in her conditions as a preemie. They are prone to infections and lung/heart damage, according to Dr. Byrne whom I spoke with, he sees it all the time, preemies just like Charlotte. In fact, he told me to tell them (which I did) that given time, these very conditions will improve. Many babies are born and suffer these very same things - one woman's baby (who I know) had the same heart condition as Charlotte, with clips on the heart and all, at birth. That girl is now a happy healthy teenager. This same woman's grandchild later was also on high oxygen with lung damage, and was able to be brought home when on even more percent oxygen than Charlotte. But that's only because the United States has such a great system to help bring preemies home. How silly that these things are even being argued. This shouldn't even be a case, according to Dr. Byrne, in that the hospital over there, and the doctors should never have made it into a case, or ordered a DNR, because Charlotte's conditions are so common to so many preemies. Preemies usually end up being children who are about a grade behind, usually, that is all. But the heart is not a problem at all, said Dr. Byrne. He also said that the lungs will get better, and sometimes preemies need ventilation for a time, just as Charlotte did, but usually will get a bit better after each ventilation, just as Charlotte has. Dr. Byrne has told me that he sees Charlotte's prognosis as quite good.

That, in fact, is precisely why a request for just 5 days' ventilation is quite reasonable. If she ever needs it again, that is probably the most she would need, if that.

Crazy doctors. They don't even know what they are doing, and are probably embarrassed to realize it, now. Sorry, but I had to vent just a little bit.

But I just want to let you know that God is at work even as we speak. He is doing some things for that dear child. But these things are dependent on our prayers! We need to keep praying! Thank you to everyone who is praying!!

Posted by: juleni at May 12, 2005 6:12 PM

And here, is one of the stories, like Charlotte's (from Slobokan's site at http://www.blogs-about.com/~slobokan/archives/category/charlotte-wyatt/?category_name=charlotte-wyatt/ :


Dazed and still in shock after the trauma of a difficult birth, Janette Rehua sat in a wheelchair grasping the tiny bundle that had been thrust into her arms.

As she gazed down at the tiny, premature daughter dwarfed by the white nappy in which she was wrapped - the child she had delivered just an hour before - all she could see was a pained, purple face and one bruised and swollen arm.
“I remember thinking that her face was the size of my little finger,” she says. “I had only seen her for a moment after I had given birth to her. Before she had been whisked away. Before the paediatrician had leaned over me and whispered gently, ‘Your daughter will just close her eyes and go to sleep. Very, very soon.’

Had she been born seven days later, at 25 weeks, doctors would have performed a Caesarean section once Janette went into labour and an incubator and ventilator would have been standing by. (The law then in Auckland, New Zealand, where she was born, decreed that babies were viable only at 25 weeks and beyond.) Grace’s misfortune was to have been born one week too early.

Yet baby Grace, despite being given no medical assistance in her first hours, breathed by herself, clinging to life against all odds. Three times doctors gently suggested that her parents should sanction the switching off of her life support. Three times the Rehuas refused. That was 16 years ago.

Today Grace Rehua, Janette’s daughter, is a happy, healthy teenager living in Perth, Australia with her parents “Oh, she’s into playing her electric guitar very loudly, wearing mismatched clothes a typical teenager,” laughs her mother.

Although the diagnosis of her disabilities was wrong, Janette and Mark believed that their daughter, despite her pitiful and pain-wracked existence, deserved the chance to fight for her life.

“Baby Charlotte’s doctors say all she feels is pain,” says Janette. “We had to watch as Grace screamed in agony at every injection, every procedure. But she remembers none of that. She fought for her chance of life and we cannot thank God enough for allowing us to keep her. Every child, no matter how disabled, has its worth. No child should be rejected because it is not perfect.

“Grace has so much to give. We only pray that Charlotte, who has touched so many people already, is somehow allowed her chance too.”
Her doctors were wrong?
((gasp)) How could that happen?

Posted by: juleni at May 12, 2005 6:14 PM

Gotta run ~ sorry! But have major stuff going on at work (my workplace) which is giving me lots of overtime these days - good for money, bad for relationships :( But it is things that simply have to be taken care of.

But, Lydia, I am staying in prayer for you! You sure are fighting the good fight...and don't let them rake you too much; the trolls are so wrong right now. A couple of them are sincerely conversing, but I can see a couple who really aren't even warranting an answer, except that you are a good person and don't want to blow anyone off, I imagine. But they really should be at another web place if they want to say some of the things they are saying...not attacking your interests. My 2 cents.

Posted by: juleni at May 12, 2005 6:19 PM

Hey, Juleni,

What you say about the videos is especially useful. I can't watch them, unfortunately, as my computer is too slow. Even at normal times it doesn't sustain videos well, and just now it's having unexplained slowdowns and taking forever even on regular internet. But if the BBC reporters are saying that the DNR was continued, that's very useful info.

If I can track down where this crazy "the DNR was void as of April 23" thing came from, I'll be even happier.

The quote you give from the opinion is, I think, part of the cause of the misunderstanding. I suspect it's been used in some article to give the impression that this is a limited DNR in some weird way and that they would do other resuscitation procedures. But I've been re-reading the entire opinion and it's clear that he means treatments for the infection--I would guess things like antibiotics--_not_ resuscitation procedures. In another part of the opinion he refers negatively to something like "aggressive intensive care treatment." In other words, she ain't going to an ICU any time in the future.

I suspect you are quite right about Charlotte's not having received what would have been best for her right from the start. The UK system may be "penny wise, pound foolish." If they gave better treatment to preemies--perhaps kept them on ventilators for longer, for example--they might avoid some other problems. Might they perhaps have lessened Charlotte's lung damage if they hadn't been in such a hurry to get her back off the ventilator? That's just an idea and could be wrong, but it's looking like as you say they don't know how to deal with preemies. I know of one little boy who _lives_ on a portable ventilator! He is learning to sign, he plays, he walks. He pulls the ventilator behind him on wheels like a pull-toy. He can't talk because of the tube, but he wasn't getting enough oxygen and would have died without it. He won't have a normal lifespan, but he's certainly developing because of this technology, and he isn't in the hospital.

I'm not responding to the semi-trolls out of niceness. I'm a philosopher (in the literal sense that I publish professional articles in technical philosophy), and I want to keep up my image as a person who is willing to talk to those with whom I disagree. Myself, I'd sort of rather blow some of these people off, and I'm certainly glad Max banned that one egregiously rude commentator. Plus, I know there are people listening in who are interested in these issues, and I can't afford to let them think, "Oh, it turned out that woman didn't know what she was talking about after all. I guess all this culture of death talk really _is_ exaggerated."

Posted by: Lydia at May 12, 2005 6:47 PM

Lydia,

You are doing a terrific job. You are addressing their points clearly and logically. Frankly, I think you've outclassed all of them. Well done.

Posted by: Tom Spence at May 12, 2005 7:16 PM

The culture of death talk is so far from exaggerated as to be under whelming. I found a partial listing of how much baby body parts were selling for back in 1999. And I have heard from a source I consider to be reliable that an adult can be worth as much as $10,000 to $180,000 in parts on the black market. And I know that just to get on the waiting list for a liver costs $25,000. I still don't know how to get in touch with Crystal Clear to find out what she has learned about the profitable business of guardianship. Can anyone help me here?

Posted by: mary et. al. at May 12, 2005 8:10 PM

There is a recent case here in Australia of a preemie who has just been allowed to go home. She was born at something like 26 weeks.

Australia has an excellent reputation with preemie babies. We have good ante-natal care, and especially commendable are the doctors and nursing staff at the various childrens' hospitals around the country.

I cannot remember the baby's name, I just know that she went home within the last week or so for the first time.

Also, I would like to point out the story of Sophie, a child who was severely injured, as a result of a car crashing into a child care centre. She lost her legs and was severely burned. Little Sophie has a tremendous will to live. Her very survival after such horrendous injuries is a testimony to her will to live. What the Australian doctors have achieved so far for her is also a tribute to their skills.

My niece, Maureen, was only two when she had an operation on her heart that is very rare. At that stage it was experimental. She survived both the heart condition and the operation.

It would be in little Charlotte's best interests if she could be removed to a children's hospital where she can be given the right kind of care. I doubt very much that she has a condition that means that she is terminally ill. The judge's order is wrong and it should be overturned. The hard part is going to be getting it overturned in a court system where death now rules.

Posted by: Maggie4life at May 16, 2005 6:27 AM

Love your stories, Maggie. Keep them coming.

Posted by: mary et. al. at May 16, 2005 11:16 PM