You In This vast city each building contains a variety of interesting dramas But the story we are about to tell is most unusual It is the story of Donnie Wharton birth It has the usual ingredients life love suffering pain guilt fear and lots of hope the cast of characters includes a mother a father brother sisters a Doctor a nurse a chaplain and myself as guide 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 Almost all of this in the intensive care unit His stay in the ICU is required by a variety of medical problems Which cause an inability to breathe without the help of a machine? In intensive care units the drama of life and death is commonplace It seems hard to imagine a worse environment in which to live Well, he always wants his way It's his way Every second of the day.
It's not very much that he doesn't get he spoiled, but he should be spoiled.
I think Donnie has astonished everybody I've known a lot of people who have been inspired by Donnie Donnie is good for the morale of the intensive care unit There were some serious problems noted right at birth weren't there he had an umphalocel and Could you tell me exactly what that is? All his intestines were on the outside of his body and he was then brought immediately here to Children's Memorial Hospital Yes, he's been an hour and a half old when he arrives And the umphalocel was repaired with several surgical procedures, right? But how many was that? There was six or seven and there were also some other abnormalities that were noted.
Yes He doesn't have a gag reflex and sucking Swallowed he was missing his left ear and he has a tracheostomy.
Yes at what age was that performed? About eight months.
Could you make a guess as to the total number of surgical procedures? He might have been Oh wow and the double hernia He had the exploratory surgery.
I guess you wouldn't count catheterizations and when he took the lung out And a lot A lot Certainly more than a dozen.
Oh, yes.
Yes.
That's at least that much.
Would you say he's a happy child neutral unhappy? Under circumstances quite happy I'd say.
Quite happy.
Would you agree with that? Super happy.
Super happy What do you attribute that to? Constant love the main reason Danny needs to be an intensive care is because of Respiratory support he needs he is on CPAP which is continuous positive airway pressure What we are giving him is a positive pressure that he needs to breathe against In doing this we keep his lungs open and keep him from getting a pneumonia when we take him off of this He goes into Respiratory failure and has difficulty breathing and does not remain Cannot remain out of the intensive care unit for more than a short period of time Help for Danny is available immediately When that child calls somebody always goes 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 He throws a little temper tantrum, but that's all right, too.
That's normal for a two -year -old to do 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 surgery in the operating rooms Perhaps Donnie is too young to be influenced by these disasters and to make the transition Feeling that this is going to happen to him and perhaps an older child might be more influenced by these events Perhaps also the ICU has become home to him and he really doesn't does not consider what's happening just considers this routine daily life Possibly I'll never get out of here You know, he's like to hope he would It's got a lot to do with your moods and it's like, you know If you're feeling down and you know some days when he looks really good you think oh boy You know, maybe this is that he's gonna start coming around and then Then he has a little setback and you think oh gosh while he's physically small his emotional and social development Appears to be first -rate any child who can develop a sign language of the complexity that Donnie has certainly has no problems Intellectually the fact he cannot speak is purely a technical and mechanical problem Can you show everybody how you know how to do sign language? You're doing stand up sit down Sit down sit down Shoes socks scared What about cereal? Cookies What about the doctor's needs you scared can you do the doctor's names dr.
Goldstein and Dr.
Idris Dr.
Nikita When I became pregnant with Donnie Um, it was a very bad pregnancy I threatened to miscarriage constantly I was always running to the emergency room bleeding very heavily and The doctor said well, we can put you on a really strong program to save this child and Do you want this program? Well, I talked it over with John and we decided we did want to have this baby So I had shots every five days and I took medicine and he guarantee it would be a perfectly normal I remember his words he said that the problem was probably mine because I had had miscarriages before and Maybe it was just a my problem.
My uterus wasn't strong or whatever So we would treat that and you would carry this child and I guarantee you a healthy child but The whole pregnancy was it wasn't a normal I had five normal children so I knew there was something going on that shouldn't have been going on and So I really did suspect Problems, but when I first felt the child moved and I thought well, no, it's moving and you know It seemed very real until the night before Donnie was born and then I really was bad.
I Had a bad dream shortly about it Right before he was born and I dreamt that he couldn't eat And of course Donnie's problems have a lot to do with his eating after he was born I carry a little guilt about leaving my other children You think they've been perhaps neglected a little that's one of the bad things Would you create a factor? to an extent I guess but most of ours 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 I have a tendency just to roll with the punch.
I guess it's something that has to be You have two brothers and how many sisters three sisters, okay, what's their names? Libby Jane Libby what about your brothers? What about time and Jimmy What about Jodie When they want to do something that maybe I think they shouldn't do I Might let them do it because I carry a little bit of guilt about not being With them as much as I think I should be when my mother was pregnant We look forward to having Donnie a lot, you know and having a little brother or something You know you dreamed about some time you just you know I never thought she would again and she did and yet it just when he was born You know to him being sick and you might not never be home when he was first born and My parents first started going to the hospital like they'd go up almost every day then because they were scared and I 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 They'd always be there but then they weren't anymore 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 we've Haven't seen my mother and father as much as we used to Like on the weekends my dad goes up usually and when he was first born They were both up all the time when we'd never really saw I 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 Then when they're home Still barely can't have my home I wash your nose We've watched him from an hour and a half of age go up to be a two and a half year old 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 Time and we sort of take a pride in him like a parent would in their child Danny has done so well in intensive care because I think we really consider the children as children When a child is critically ill you need to treat them as a critically ill child when they stabilize You need to consider them as a child have the parents bring their own toys in Stimulating twice things that help the child progress allowing the parents to be there as much as they want to Helps the child to progress 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 Three four tubes connected to them anybody who walks in Responds to the equipment when you put a child in clothes a little girl put bows in their hair The child then has more of a personality and other people come back and respond better to them again Now he's a little more stable he was you know he's had what 18 arrests and As a matter of fact he was in the car with Betty at one time when he had one And I was holding him up in intensive care one night when he had one Some people think we're a little odd I guess you know As a matter of fact the day he had the arrest in the intensive care 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 And the chaplain came in the Whenever there's trouble you know the chaplain comes up You know and they kind of peek in to see who the grieving person is and I was just sitting there reading the book I'm smoking a cigarette the guy walked out came back in so I said well, I think you're probably looking for me and I Said the I said Donnie just arrested the guy he couldn't figure it out.
He said He would he said but I said well, you know I said they've got him back as many times as they have 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 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 We have a lot of faith in the doctors and nurses.
Yes Don is a very good example of a child who would certainly have died had he not been in an environment such as ours I don't think that society has given us any direction as to what to do for these children Except to do what we're trained to do treat these children save them from disastrous emergencies the fact that Donnie has had 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 setting and nobody has said to us Medically speaking nursing speaking that we should not continue to treat him.
So we do 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 Well, the state pays something towards the cost of his hospital stay they pay 166 dollars a day.
I'm not sure how much his actual Hospital bill is per day, but it's probably in excess of 600 dollars a day Hospital has to write off the balance their costs are written off by in quotes free care funds donations raised by the hospital to meet these sorts of expenses The hospital is in trouble financially related to patients such as Donnie and other patients who are not fully reimbursable If you had your druthers, how would you see the financing of such patients arranged? Oh if I had my druthers I would have him totally reimbursed By a national Medical care program until society in general whoever those representatives may be say We must not care for children once certain problems are reached 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 Sometimes people ask me Why did this happen? Why are kids born so messed up? Why why so sick? Why a life of pain? And I know they want an answer and I know I don't have an answer No, I used to play a game with the chaplains They ask him You know you can tell me That when a baby dies he goes to heaven Listen that I said, but now you tell me why where it says in the Bible any place why a baby has to suffer and I never had one yet to give me an answer I Believe that Whenever this comes into a family's life they tried desperately to make some kind of sense out of it for themselves And when they asked me why did this happen? I don't think they really believe I know 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 That seems absolutely absurd 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 Because they've got to come up to their own answer on that I don't know why there are a lot of Lot of things I I reject I reject that you know God did this to them.
God is punishing them God thinks they're bad any of that.
I just can't go with that.
I Think it represents a piece of one of the mysteries of life You know why is there pain and sickness and trouble is a mystery? 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 For me, I just have to live with the mystery and I have to let them know that I'll struggle with them and sit with them and be with them But I can't give them answers.
I just have to be with them.
I'd like some answers, but I Really don't care anymore why he's here he's happy beautiful, he gets a lot of love and attention I think the The outrageous thing is to try to answer Yeah away.
I think you must just sit quietly with the question for a while Maybe for a long while so the Why of it still escapes you I? Think we try just not to ask ourselves that anymore As you go into this farther or as it goes along farther you You just don't ask questions anymore.
You're thankful for what you got and you take it and you don't Transcend thinking anymore.
We used to at first, you know, you're always Well, I guess the normal thing is you then he questioned like an answer And then he situation you'd like a solution and they're just with Donnie.
There seems to be no solution to He's mystified a lot of medical people Oh Oh From the beginning though, you know when he was first born you say boy You know if you just live a little while, you know You keep a little while in it and it's what two and a half years We were always asking for a little more time But now really He's got a chance to see a little bit of life Not like normal people would consider an intensive care a little bit of life, but he's had happiness He said, you know, it seems to be a meaning for him to be alive, you know Whereas you know if a baby is born and dies a month later, you know Well, you know what was the purpose at all for it, you know? Well now he you can say he has had some happiness you I think that would be a comfort to us not to him, but to us and It would justify the end now, I guess Donnie is an extraordinarily attractive youngster and surely anyone will want to do all they can for him But there is a broader issue There are many other Donnie's perhaps not all is attractive What should society do about them? I believe that one of the best measures of what makes a society great is the way it cares for its unfortunate And that we must commit our resources for these purposes Society is not anonymous It is you and I You
