WEBVTT

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You

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In

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This vast city each building contains a variety of interesting dramas

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But the story we are about to tell is most unusual

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It is the story of Donnie Wharton birth

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It has the usual ingredients life love suffering pain guilt fear and lots of hope

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the cast of characters includes a mother a father brother sisters a

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Doctor a nurse a chaplain and myself as guide

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Donnie is two and a half years old and for about two years of his life has been a resident of Children's Memorial Hospital

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Almost all of this in the intensive care unit

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His stay in the ICU is required by a variety of medical problems

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Which cause an inability to breathe without the help of a machine?

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In intensive care units the drama of life and death is commonplace

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It seems hard to imagine a worse environment in which to live

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Well, he always wants his way

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It's his way

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Every second of the day. It's not very much that he doesn't get he spoiled, but he should be spoiled. I think

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Donnie has astonished everybody I've known a lot of people who have been inspired by Donnie

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Donnie is good for the morale of the intensive care unit

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There were some serious problems noted right at birth weren't there he had an umphalocel and

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Could you tell me exactly what that is?

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All his intestines were on the outside of his body and he was then brought immediately here to Children's Memorial Hospital

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Yes, he's been an hour and a half old when he arrives

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And the umphalocel was repaired with several surgical procedures, right?

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But how many was that?

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There was six or seven and there were also some other abnormalities that were noted. Yes

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He doesn't have a gag reflex and sucking

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Swallowed he was missing his left ear and he has a tracheostomy. Yes at what age was that performed?

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About eight months. Could you make a guess as to the total number of surgical procedures? He might have been

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Oh wow

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and the double hernia

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He had the exploratory surgery. I guess you wouldn't count catheterizations

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and when he took the lung out

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And a lot

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A lot

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Certainly more than a dozen. Oh, yes. Yes. That's at least that much. Would you say he's a happy child neutral unhappy?

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Under circumstances quite happy I'd say. Quite happy. Would you agree with that? Super happy. Super happy

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What do you attribute that to?

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Constant love

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the main reason Danny needs to be an intensive care is because of

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Respiratory support he needs he is on CPAP which is continuous positive airway pressure

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What we are giving him is a positive pressure that he needs to breathe against

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In doing this we keep his lungs open and keep him from getting a pneumonia when we take him off of this

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He goes into

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Respiratory failure and has difficulty breathing and does not remain

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Cannot remain out of the intensive care unit for more than a short period of time

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Help for Danny is available immediately

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When that child calls somebody always goes

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He really doesn't want for much we do have problems if something is going on and you're playing with Danny when you put him in

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He throws a little temper tantrum, but that's all right, too. That's normal for a two-year-old to do

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The ICU is constantly receiving admissions from elsewhere in the hospital from the emergency room of very ill children and receiving patients who've undergone major

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surgery in the operating rooms

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Perhaps Donnie is too young to be influenced by these disasters and to make the transition

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Feeling that this is going to happen to him and perhaps an older child might be more influenced by these events

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Perhaps also the ICU has become home to him and he really doesn't does not consider what's happening just considers this routine

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daily life

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Possibly I'll never get out of here

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You know, he's like to hope he would

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It's got a lot to do with your moods and it's like, you know

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If you're feeling down and you know some days when he looks really good you think oh boy

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You know, maybe this is that he's gonna start coming around and then

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Then he has a little setback and you think oh gosh

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while he's physically small his

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emotional and social development

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Appears to be first-rate any child who can develop a sign language of the complexity that Donnie has certainly has no problems

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Intellectually the fact he cannot speak is purely a technical and mechanical problem

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Can you show everybody how you know how to do sign language? You're doing stand up sit down

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Sit down sit down

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Shoes

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socks

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scared

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What about cereal?

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Cookies

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What about the doctor's needs you scared can you do the doctor's names dr. Goldstein and

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Dr. Idris

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Dr. Nikita

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When I became pregnant with Donnie

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Um, it was a very bad pregnancy I threatened to miscarriage constantly

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I was always running to the emergency room bleeding very heavily

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and

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The doctor said

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well, we can put you on a really strong program to save this child and

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Do you want this program? Well, I talked it over with John and we decided we did want to have this baby

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So I had shots every five days and I took medicine and he guarantee it would be a perfectly normal

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I remember his words

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he said that the problem was probably mine because I had had miscarriages before and

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Maybe it was just a my problem. My uterus wasn't strong or whatever

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So we would treat that and you would carry this child and I guarantee you a healthy child

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but

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The whole pregnancy was it wasn't a normal I had five normal children

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so I knew there was something going on that shouldn't have been going on and

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So I really did suspect

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Problems, but when I first felt the child moved and I thought well, no, it's moving and you know

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It seemed very real until the night before Donnie was born and then I really was bad. I

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Had a bad dream shortly about it

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Right before he was born and I dreamt that he couldn't eat

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And of course Donnie's problems have a lot to do with his eating after he was born

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I carry a little guilt about leaving my other children

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You think they've been perhaps neglected a little that's one of the bad things

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Would you create a factor?

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to an extent I guess but most of ours

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They tend to hide it I guess with exception to one of them she'll tell you but the rest of me they more or less

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I have a tendency just to roll with the punch. I guess it's something that has to be

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You have two brothers and how many sisters three sisters, okay, what's their names?

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Libby

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Jane

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Libby what about your brothers?

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What about time and Jimmy

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What about Jodie

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When they want to do something that maybe I think they shouldn't do I

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Might let them do it because I carry a little bit of guilt about not being

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With them as much as I think I should be when my mother was pregnant

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We look forward to having Donnie a lot, you know and having a little brother or something

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You know you dreamed about some time you just you know

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I never thought she would again and she did and yet it just when he was born

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You know to him being sick and you might not never be home when he was first born and

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My parents first started going to the hospital like they'd go up almost every day then because they were scared and I

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Like I don't know about everybody else, but I used to get really you know jealous because I was so used to like after school

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They'd always be there but then they weren't anymore

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They'd just be there at night and then maybe we wouldn't see him till I don't know the next night or something

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we've

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Haven't seen my mother and father as much as we used to

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Like on the weekends my dad goes up usually and when he was first born

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They were both up all the time when we'd never really saw I

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Feel a lot better when my parents are up there then because then I know somebody's with him and he's happier that way

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Then when they're home

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Still barely can't have my home

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I wash your nose

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We've watched him from an hour and a half of age go up to be a two and a half year old

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We've watched him sit for the first time hold his head up for the first time eat by himself the first time stand the first

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Time and we sort of take a pride in him like a parent would in their child

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Danny has done so well in intensive care because I think we really consider the children as children

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When a child is critically ill you need to treat them as a critically ill child when they stabilize

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You need to consider them as a child have the parents bring their own toys in

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Stimulating twice things that help the child progress allowing the parents to be there as much as they want to

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Helps the child to progress

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I think as soon as possible a child should be put in clothes when a child's laying in a bed and just a diaper and have

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Three four tubes connected to them anybody who walks in

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Responds to the equipment when you put a child in clothes a little girl put bows in their hair

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The child then has more of a personality and other people come back and respond better to them again

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Now he's a little more stable he was you know he's had what 18 arrests and

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As a matter of fact he was in the car with Betty at one time when he had one

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And I was holding him up in intensive care one night when he had one

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Some people think we're a little odd I guess you know

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As a matter of fact the day he had the arrest in the intensive care

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I was holding him so they took him and the doctors came in so I left that I went and I was sitting in the waiting room

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And the chaplain came in the

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Whenever there's trouble you know the chaplain comes up

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You know and they kind of peek in to see who the grieving person is and I was just sitting there reading the book

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I'm smoking a cigarette the guy walked out came back in

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so I said well, I think you're probably looking for me and

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I

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Said the I said Donnie just arrested the guy he couldn't figure it out. He said

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He would he said but I said well, you know I said they've got him back as many times as they have

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I said, you know, I got faith they'll do it again. So I sat there read the book, you know, and pretty soon they came out

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Only then he's all right. So I went back in with another hour. So he's sitting back up again. Just like nothing ever happened

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We have a lot of faith in the doctors and nurses. Yes

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Don is a very good example of a child who would certainly have died had he not been in an environment such as ours

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I don't think that society has given us any direction as to what to do for these children

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Except to do what we're trained to do treat these children save them from disastrous emergencies

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the fact that Donnie has had

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Almost three quarters of his life in the hospital says that perhaps he is going to spend a great deal more time in a hospital

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setting and nobody has said to us

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Medically speaking nursing speaking that we should not continue to treat him. So we do

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This raises a question though about whether society which has encouraged these advances are willing to pay for them who pays for Donnie for example

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Well, the state pays something towards the cost of his hospital stay they pay

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166 dollars a day. I'm not sure how much his actual

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Hospital bill is per day, but it's probably in excess of 600 dollars a day

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Hospital has to write off the balance their costs are written off by in quotes free care funds

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donations raised by the hospital to meet these sorts of expenses

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The hospital is in trouble financially related to patients such as Donnie and other patients who are not fully reimbursable

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If you had your druthers, how would you see the financing of such patients arranged? Oh if I had my druthers

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I would have him totally reimbursed

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By a national

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Medical care program until society in general whoever those representatives may be say

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We must not care for children once certain problems are reached

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Then I think that we have to do the best we can for these children in the best light that we can at the time

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Sometimes people ask me

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Why did this happen? Why are kids born so messed up? Why why so sick? Why a life of pain?

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And I know they want an answer and I know I don't have an answer

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No, I used to play a game with the chaplains

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They ask him

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You know you can tell me

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That when a baby dies he goes to heaven

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Listen that I said, but now you tell me why where it says in the Bible any place why a baby has to suffer

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and I never had one yet to give me an answer I

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Believe that

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Whenever this comes into a family's life they tried desperately to make some kind of sense out of it for themselves

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And when they asked me why did this happen? I don't think they really believe I know

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But I think they are trying to let me in on the fact that they're struggling to make some kind of sense out of something

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That seems absolutely absurd

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And I want to bless that search on their part and I don't want to interrupt it and I don't want to get in its way

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Because they've got to come up to their own answer on that I don't know why

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there are a lot of

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Lot of things I I reject I reject that you know God did this to them. God is punishing them

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God thinks they're bad any of that. I just can't go with that. I

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Think it represents a piece of one of the mysteries of life

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You know why is there pain and sickness and trouble is a mystery?

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But there's also a mystery why there's love and affection and care and why do people get along and that's a mystery, too

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For me, I just have to live with the mystery and I have to let them know that

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I'll struggle with them and sit with them and be with them

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But I can't give them answers. I just have to be with them. I'd like some answers, but I

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Really don't care anymore why he's here he's happy

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beautiful, he gets a lot of love and attention I

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think the

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The outrageous thing is to try to answer

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Yeah away. I think you must just sit quietly with the question for a while

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Maybe for a long while

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so the

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Why of it still escapes you I?

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Think we try just not to ask ourselves that anymore

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As you go into this farther or as it goes along farther you

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You just don't ask questions anymore. You're thankful for what you got and you take it and you don't

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Transcend thinking anymore. We used to at first, you know, you're always

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Well, I guess the normal thing is you then he questioned like an answer

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And then he situation you'd like a solution and they're just with Donnie. There seems to be no solution to

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He's mystified a lot of medical people

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Oh

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Oh

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From the beginning though, you know when he was first born you say boy

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You know if you just live a little while, you know

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You keep a little while in it and it's what two and a half years

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We were always asking for a little more time

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But now really

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He's got a chance to see a little bit of life

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Not like normal people would consider an intensive care a little bit of life, but he's had happiness

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He said, you know, it seems to be a meaning for him to be alive, you know

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Whereas you know if a baby is born and dies a month later, you know

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Well, you know what was the purpose at all for it, you know? Well now he you can say he has had some happiness

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you I

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think that would be a comfort to us not to him, but to us and

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It would justify the end now, I guess

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Donnie is an extraordinarily attractive youngster and surely anyone will want to do all they can for him

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But there is a broader issue

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There are many other Donnie's perhaps not all is attractive

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What should society do about them?

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I believe that one of the best measures of what makes a society great is the way it cares for its unfortunate

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And that we must commit our resources for these purposes

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Society is not anonymous

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It is you and I

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You