My name is Terry Sullivan, I'm 28.
We just recently moved to Evanston and I'm an assistant dean at Loyola University.
And I'm also a doctoral student there.
My name is Monica Sullivan and I'm 28.
And I went to Loyola University and I'm presently a Chicago public school teacher.
I teach second grade on the west side of the city.
Well he's a delightful, happy little guy.
He likes to play.
He's fascinated with wheels and toys that make music or noise.
He loves the stereo speakers.
He wraps himself around the speakers when Terry turns them on.
He goes to school now and is doing quite well.
Good.
He is John Sullivan, son of Monica and Terry.
One of John's favorite activities is eating.
Don't lay out.
Chew it.
That's enough.
You've had enough.
Good.
May I have the banana please? Good.
Good boy.
Oh you're thirsty.
Didn't anybody give you a drink today? Put it down.
Down.
Down.
That's a good boy.
Good.
Good.
Look.
Look.
What's this? Pick up the spoon.
Don't play.
Come on.
In.
John Sullivan is a very special child.
He is multiply handicapped and mentally retarded.
He has a heart condition which I believe is called a tetralogy with a ductus.
He has two web fingers on each hand.
He has webbed toes.
He's severely mentally retarded.
He's had one eyelid that did not open and has been corrected after about what? Two? Three surgeries? Two.
Two.
He's had a hernia that's been repaired when he was quite small.
He has, he's just generally a very small child.
The curious thing is that he looks to be no more than a year, 15 months.
And acts at about that age.
We're very lucky at this point is that he's five but he doesn't look like he's five and therefore he doesn't have to act like he's five.
You remember? Sure you do.
He didn't have any tear ducts or his tear ducts were blocked so they had to make tear ducts before they could do the eye surgery.
He had a hernia which was fixed when he was about a year old.
And he has a very high palate which made it very difficult to feed him when he was first born.
He's never had to have surgery on it but he has a very high roof in his mouth.
In fact never did drink from a bottle really.
Not well, ever.
What's the procedure? Gavaged? You had to throw a tube? We had to learn how to do it.
Until he was old enough to eat from a spoon.
But once he got something off the spoon that was it.
He loves to eat.
He didn't like to suck but he loves to eat.
I'm Jerry Schulman.
I'm a doctor at Children's Memorial Hospital and it was there that I first met the Sullivan's.
It is John Sullivan that we want to talk about today.
The trouble surrounding his birth must have been a terrible shock and difficult thing.
Can you reconstruct any of that? Well, I had a perfectly normal pregnancy.
It was a wonderful pregnancy.
I never got sick until the day that I delivered my son.
I didn't have any more any sickness, nothing.
I was healthy and fit.
And I went in to have what I thought would be a perfectly normal baby.
And I went through labor and it wasn't so bad.
And we delivered the baby, the doctor and I, and I was awake during the delivery.
And as I was laying on the delivery table and the doctor was working around and John was in an incubator a few feet from the delivery table.
And I didn't have, couldn't see real well.
And I was looking and his little hand was up.
And I said to the doctor, I said, how come his fingers are stuck together? And he said, well when I finish here I'll take a look at it.
So he went over and looked at John and he came over to the delivery table with John in his hands and said, Well Monica, he said John has two webbed fingers on each of his hands.
He said, but the bones are all there and it's something that can be easily fixed.
But you know, that's wrong with him.
But don't be disappointed.
It happens.
And he's, his toes are also webbed.
And he reassured me that, you know, that that would be, it could be taken care of very easily.
That was all, that's all he told me that day too.
And I suspect that there were obviously other difficulties with Jan.
And that may be the best way for him to have approached it.
And that he told you that there was some difficulty but didn't leave you that day feeling as if, you know, there were 17 ,000 antibiotics.
He told me later when I asked him about it, you know, I said, you must have known that there was something more wrong with him.
And he said that, yes, he felt that there probably would have been more wrong with John.
But that he was more concerned about me at that point.
That he considered me his primary patient.
And he wanted me to be comfortable.
And he also didn't want to give any opinions that might cause me to be upset and later turn out not to be true.
So it went from that initial discovery that I really made because I was the first one.
Well, at least I brought it to his attention, it seemed to me, about his fingers.
To, he was born very early in the morning.
Later that, I got to see him once and hold him once.
About six o 'clock that morning because he was born about two.
And then when the pediatrician came in at, later that morning, he told me that while John was not premature, his weight was five and a half pounds when he was born.
And he had been carried what was considered a normal term, that they were going to put him in the preemie nursery.
Because he was having some trouble feeding.
And that they wanted him to be in this isolated nursery.
Which meant that I never got to see him or hold him during the time that I was hospitalized.
We could see him, what, for ten minutes a day through a glass window and he was six to six.
Yeah, I never held him until he was three months.
And then I had to take care of my children.
That was the first time we held him.
He didn't come home for? A month.
That was even longer than that.
Just before Christmas.
Two months I guess.
Do you have any idea what the cause of John's troubles is? No.
He's had chromosome testing twice.
Which results were normal? Which was startling because at one point Dr.
Nadler thought that he even could make a picture of the kind of defect he was going to find.
But it just hasn't shown up.
So it remains a mystery.
Yeah, I know.
They talked about chromosomal accident a couple of times up there.
Not in the sense of physical trauma because there was nothing like that.
But it was just wholly inexplicable.
I wonder if either of you went through a period of thinking maybe something you had done and someone had done this.
Yeah, I was very much so.
Simply because, I don't know, as a woman he came out of my body.
I wanted him to be perfect.
He wasn't perfect.
That was a great disappointment.
And as the days went on that first month, every day brought more bad news.
There was something else wrong.
They found something here.
This eye didn't open.
That foot wasn't properly shaped.
At one point every conceivable thing you'd mention they'd tell you was abnormal.
Even those things which would present no difficulty.
He had dimples in his knees and they'd say, yeah, we noticed that.
The joints.
Are weak.
You know, and you'd be like, please.
To the point where the first pediatrician we saw said that there were so many abnormalities that he didn't think he'd live and probably it would be best that he didn't.
That was the first, that was our first visit with him.
He said don't expect him ever to do anything and he probably won't that well.
I know if somebody had told me when he was a month old his IQ was only going to be 10, I would have been shattered.
I would have thought, my God, he'll never do anything.
We were told about the seriousness of John's condition when he was 12 days old by a pediatrician who called, not a pediatrician from Children's, but a pediatrician at the hospital that he was born at.
And I had met him once the first day that John was in the hospital born.
And then he told me that I couldn't take John home when I left the hospital.
So I said, all right.
And I went home early because I couldn't stand being in the hospital and not having my baby.
And he told me I could call him and he would let me know.
And he started running GI series and things like that on him.
And then he called one day and he said, his nurse called and said that the doctor would like to see you in his office tonight at six o 'clock.
And I was all excited.
I said, well, does this mean John's going home? And she said, well, I don't know, Mrs.
Sullivan.
The doctor just asked me to make this appointment.
Can you come? And I said, yes.
So we went to the doctor's office that night and his waiting room was full of people.
And he asked us to step into his office and he closed the door and proceeded to tell us that John was probably not going to live.
In fact, he should probably be baptized immediately because they didn't know how long he was going to make it, that they had just discovered that he had a heart murmur.
And any kind of heart involvement at the age of 10 days or 12 days was a very ominous sign.
And told us that there were many, many things wrong with him and wanted to know if I had taken anything during my pregnancy and so on and so forth.
And then pulled out some pictures of children with webbed necks and all kinds of facial deformities and strange looking bodies.
And said, well, he's got this and he's got that.
And I couldn't even look at the pictures.
Conceivably the worst possible approach in retrospect.
And then he started accepting phone calls while we were sitting there, numbed from what he had just said to us.
We had never really seen John close up.
So he could have had four ears for really all that I had seen of him.
And it was just frightening.
And we said to him, what should we do? And he said, well, I'm going to send you down to Children's Memorial Hospital.
I think you should be moved immediately.
And we said, what, tonight? Tomorrow? When? He said, well, I think we can wait till tomorrow morning.
And then he told us that it would be all right if we took him down to Children's Memorial.
And then he started answering the telephone and said goodbye and left us.
And we walked out of his office and to the car and got in the car and we just cried.
And then we decided that we'd better go to the church and ask the priest to come over and baptize him.
And then we decided that we had to do probably the hardest thing.
And that is go and tell his grandparents what the situation was.
And we went to Terry's folks and explained to them as best that we could, which was very difficult.
You know, it was, John is named after his grandfather, Sullivan.
And everybody was most excited about him.
And then we had to go to my mother.
And I'm an only child and this is her first grandchild.
And to make matters worse, my grandmother was at my mother's house at the time, dying.
And we had to tell her that she had never seen him.
In fact, the day that she came to see him, they had already put him in the isolated nursery.
And she wasn't allowed to get in there and tell her that, you know, the bad news.
And then we went home.
And I cried all night.
You're at that stage where everybody has told you that he probably won't love and it's better that he doesn't.
And at that point you hope he doesn't.
You know, you keep hoping the hospital will call.
You do because you are so afraid of what the next day is going to bring.
You don't know whether he's suffering or not.
And God knows you don't want him to suffer.
And then quite quickly it begins to dawn on you exactly the enormity of maybe what tomorrow is going to bring.
And it just scares you to death.
And you want it to be over.
You just want it to be over.
You want your life to be normal.
And you want it to be what you had expected it to be for the last ten months.
And it's not.
I'd be very interested to know of all the things that have gone on, what seemed to help the most.
The major one is Jan, the fact that he's happy.
He obviously is not, well, not capable of a lot of things.
Not made miserable by the fact that he's not capable of them.
He's very much capable of loving and being loved and being happy.
He has likes and dislikes.
And things make him happy and make him laugh.
And he can make other people happy.
What it does for you is it gives you something of a lesson.
It's a bad idea to make ten -year plans and five -year plans.
To expect your life to go the way it should, which is a healthy thing to get out of, I think.
You have difficulty coping, but I think in the end, after you've made the adjustment, that you end up with a healthier outlook, with a more realistic outlook of what to expect and what you really want your life to be like.
You realize that you can't always control it, but that you can always make it work one way or another.
But that's after five years.
The first few months were most difficult.
Probably we got the most help from the people that we talked to at the hospital.
And people and our families who were very supportive.
You have to learn to rely on other people.
You have to be willing to accept other people's help.
You have to be willing to not see doing this in the position of other people.
You have to assume that you can lead them with them.
You can't expect them to have to be willing to cope with a child that has physical and mental handicaps.
That really is as much part of their life as it is yours.
Come on back, John.
Come on back.
Come on back, John.
Come on back.
That's a big boy.
That's a big boy.
Okay, do it again.
Stand up straight, John.
Stand up straight.
My heart is laughing.
It's so much fun.
Hey, John.
Hey, John.
Hey, John.
Come on back.
Come on back.
Good boy.
Stand up like a big boy.
That's right.
That's right.
Oh, good boy.
Good boy.
What's that? Oh, you're being so cute.
You're being so cute.
Take my legs in every direction.
It's part of the guilt thing, too.
It's very easy.
You know, you felt bad that he was like that.
You questioned yourself because people were questioning you.
You know, is this in your family background? Did you do anything while you were pregnant? Did you take anything? You know, this, that, and the other thing.
Because you had to go through medical histories every time you went in.
I got so I wanted to tape the quarter just to play for the doctors and the interns and the externs and the students that we had to tell it to.
That leaves me realize that there is nothing in the history of the pregnancy that is any different from what anybody else does.
And eventually, you know, you realize that there is no causal factor.
But that took me a very long time.
I don't think that I, it was, you know, several years before I could really say to myself, I just, there was nothing that I could have done differently to make him normal.
And this is the way he is and this is the way it is.
And who cares why it happened? It's not going to change anything.
What I have to do is deal with now and not what happened before.
I'd like to read you a quote from a Dr.
Joseph Fletcher who is a professor of medical ethics at the University of Virginia.
I must say I read this in an article and I was so surprised, shocked, that I wrote to him to find out if the quote was an accurate statement of what he has stated.
And the quote is as follows.
Any individual of the species Homo sapiens who falls below the IQ 40 mark in a standard Stanford -Binet test, amplified, if you like, by other tests, is questionably a person.
Below the 20 mark, not a person.
I'm interested in your reactions to that statement.
He's just never met John Sullivan because John Sullivan is a person.
He's a living, functioning, loving human being.
And I don't know.
I understand a lot of other kids.
I don't want to give the impression that John is abhorrent, retarded.
An awful lot of kids in that IQ range are happy and make other people happy, which is enough.
Really? Yeah, they, you just, I don't know.
You know, John Sullivan is not a tragedy.
His life certainly does serve a purpose.
He enriches mankind in his own way.
He, we meet people, fewer lately, but we've, you know, had encounters with people who look upon us as bearing some great tragedy all the time, and they sympathize with us for that reason.
And it's very hard to try and convince them that we don't consider John's life a tragedy, that we don't want to be sympathized with for those reasons, and we don't want to be pitied.
John brings a lot to us and has given a lot to us and has given a lot to people that he's come in contact with.
Oh, I see John over there, down by the riverside, down by the riverside, Oh I see him ,ong by the riverside, Oh I, oh, I ,傻, sirenny, Up and down and down and down and down and down, keep watching home together, watch it, watch, watch it, watch, watch it Oh, drum my boy, when you come by me, I like your grace.
Let's throw it on the floor.
You must throw it on the floor.
Ooh! Ooh! The belly laugh.
Go ahead, John.
Go ahead.
That's a boy.
Good try.
That was good.
That was a nice try.
Try it again.
Hey John, can you take these off? Apple.
Apple.
John, take off the rings.
Open the milk.
Put it in, John.
Where does it go? That's right.
That's right.
You can open now.
Can you put it in, John? Can you put it in? No.
Down by the riverside.
Oh, I swat the time away.
Down by the riverside.
Down by the riverside.
In the days of the ancient Greek philosophers, children who were defective were left on the mountainside to die.
We live in a more enlightened age.
A good criteria for judging the quality of a society is what it does to care for those who are unfortunate.
What we've been seeing are three remarkable people, Monica and Terry Sullivan and their son John.
They consider themselves lucky, and I believe they are.
