KEYNOTE

BY

C, EVERETT KOOP, MD

SURGEON GENERAL

      AND

DEPUTY ASSISTANT SECRETARY FOR HEALTH

PRESENTED TO THE SURGEON GENERAL'S CONFERENCE ON

CHILDREN WITH HANDICAPS AND THEIR FAMILIES

       PHILADELPHIA, PENNSYLVANIA

          DECEMBER 13, 1982


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(GREETINGS TO HOSTS, GUESTS)

  I WANT TO THANK EVERYONE WHO HAS CONTRIBUTED TO THIS WORKSHOP IN

ANY CAPACITY AT ALL, THE SUBJECT IS ONE OF GREAT NATIONAL CONCERN AND

THE ATTENDANCE LIST IS JUST SHIMMERING WITH THE NAMES OF PEOPLE KNOWN

FOR THEIR KNOWLEDGE, EXPERIENCE, AND -- MOST IMPORTANT OF ALL -- THEIR

HUMANENESS,

  I CAN TELL YOU FROM PERSONAL EXPERIENCE THAT IT'S DIFFICULT FOR

SOMEONE TO GET INTO THE GOVERNMENT, BUT EVEN ONCE YOU'RE INSIDE, IT'S

AWFULLY HARD TO GET THINGS DONE, MAYBE THAT'S GOOD, ##MAYBE THAT

PROTECTS ALL OF US FROM HAVING A GOVERNMENT THAT KNOWS TOO MUCH ABOUT

US AND WANTS TO DO TOO MUCH FOR US. ON THE OTHER HAND, IT MEANS THAT

THE CONTRIBUTION OF EVERY SINGLE PERSON IN A GOVERNMENT-SPONSORED

EVENT SUCH AS THIS WORKSHOP IS ESPECIALLY IMPORTANT AND APPRECIATED,

SOwTHANK YOU ONCE AGAIN.

  OUR TASK TODAY AND TOMORROW IS NOT AN EASY ONE. WE ARE ASKING

EACH OTHER TO DEAL WITH A VERY COMPLEX ISSUE AND TO DO SO, KEEPING IN

MIND THE MANY LEVELS OF COMPLEXITY: THE EMOTIONAL AND THE MORAL, THE

MEDICAL AND THE TECHNOLOGICAL, THE SOCIAL, THE PSYCHOLOGICAL, AND THE

FINANCIAL,


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  OF COURSE, WE WON'T ALWAYS BE EXPLICITLY ATTENDING TO EACH OF THESE

LEVELS,  BUT WE KNOW THEY ARE THERE,  WHEN WE TALK ABOUT "COST-EFFEC-

TIVE LIFE-SUPPORT SYSTEMS," WE ARE IMPLICITLY PUTTING SOME DOLLAR VALUE
ON A HUMAN LIFE, WE MAY NOT WANT TO ADMIT IT, BUT THAT'S CERTAINLY ONE

OUTCOME. SO THE MORAL AND THE TECHNOLOGICAL AND THE ECONOMIC DO COME

TOGETHER, WHETHER OR NOT WE FEEL COMFORTABLE ABOUT IT,

  THERE IS YET ANOTHER COMPLICATION, THE LIVES WE ARE CONCERNED WITH

AT THIS WORKSHOP ARE NEW LIVES,  WE ARE ABLE TO INTERACT WITH THEM, BUT

THERE IS A CLEAR LIMIT TO THIS INTERACTION, WE KNOW, FOR EXAMPLE, THAT

THERE CAN BE NO TRUE "INFORMED CONSENT" WITH A NEWBORN -- PARTICULARLY

IF THE NEWBORN IS DISABLED IN SOME WAY, SO WE MUST TURN TO THE PARENTS

OF THOSE NEW LIVES FOR UNDERSTANDING AND CONSENT,

  AND WE MUST ALSO TURN BACK TO OUR OWN KNOWLEDGE AND EXPERIENCE AND

HUMAN UNDERSTANDING, FOR WE PROFESSIONALS IN HEALTH AND SOCIAL SERVICES
MUST FIRST OBTAIN FROM OURSELVES OUR OWN "INFORMED CONSENT" BEFORE
GOING AHEAD WITH ANY PROCEDURE OR BEFORE OFFERING ANY ADVICE. PATIENTS

AND FAMILIES MAY COME AND GO, BUT WE HAVE OURSELVES TO FACE IN THE

MIRROR EVERY MORNING,


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  1 HAVE SPENT MY ENTIRE ADULT LIFE IN PEDIATRIC SURGERY. AND IF I

HAD IT TO DO ALL OVER AGAIN -- 1 GLADLY WOULD. MY PATIENTS WERE AMONG

THE MOST VULNERABLE OF HUMAN BEINGS,,. CHILDREN WHO WERE EXPERIENCING A

SEVERE PHYSICAL DISABILITY, A LIFE-THREATENING DISABILITY, BUT WHO
NEVERTHELESS COULD NOT TELL US ABOUT IT, IN SUCH SITUATIONS, HUMAN

LANGUAGE -- OUR MOST EFFECTIVE MEDIUM FOR GIVING REASSURANCE -- IS OF
LITTLE OR NO USE, THESE PATIENTS ARE, FOR ALL INTENTS AND PURPOSES,

INCOMMUNICADO,  UNABLE TO GET THEIR "INFORMED CONSENT," I SCRUPULOUSLY

ASKED FOR THE CONSENT OF THEIR PARENTS OR GUARDIANS, AND I WANTED MY

OWN AS WELL,

  BUT IT WOULD BE A MISTAKE FOR ME TO DWELL ON THE POTENTIAL HURDLES

AND BARRIERS TO THE CARE OF DISABLED INFANTS AND CHILDREN, I THINK WE
ALL NEED TO REMEMBER THAT, AS DIFFICULT AS OUR OWN PARTICULAR TASKS
MAY SOMETIMES BE AND AS SERIOUS AS SOME OF THE SPECIFIC PROBLEMS MAY
BE FOR OUR PATIENTS AND THEIR FAMILIES, THE OVERWHELMING DIRECTION OF
INFANT AND CHILD HEALTH IN THIS COUNTRY IS TOWARD IMPROVED CARE AND

BETTER OUTCOMES.

  THE INFANT MORTALITY RATE IS STILL DECLINING: THE PROVISIONAL RATE
FOR THE 12 MONTHS ENDING IN JULY, THE LATEST FIGURE WE HAVE, STANDS AT
11.3 INFANT DEATHS PER 1,000 LIVE BIRTHS, THE LOWEST 12-MONTH RATE IN


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OUR HISTORY, THERE HAD BEEN SOME FEELING IN THE PAST YEAR OR SO THAT
WE WERE HITTING A PLATEAU, THAT THE CURVE WOULD BEGIN TO FLATTEN OUT
AND WE WOULD HAVE TO BEGIN DEALING WITH THE HARD-CORE ISSUES AFFECTING
PERINATAL CARE IN THIS COUNTRY,  BUT THE CURVE IS NOT FLATTENING OUT.
IT IS STILL GOING DOWN AT ABOUT THE SAME ANGLE AND WE HAVE NOT YET HIT
ANY INFANT MORTALITY RATE THAT)% FOR OUR SOCIETY, THE IRREDUCIBLE
MINIMUM,

  OF EQUAL SIGNIFICANCE IS THE FACT THAT MOST OF THE INFANT LIVES WE
ARE SAVING ARE HEALTHY LIVES,  THERE IS NO REAL EVIDENCE SO FAR THAT
THE INFANT MORBIDITY RATE GOES UP AS THE INFANT MORTALITY RATE GOES
DOWN, BUT, IN ALL CANDOR, WE HAVE NOT DONE THE KIND OF RESEARCH THAT'S
REQUIRED IN ORDER TO ELEVATE THIS CONCLUSION ABOVE THE LEVEL OF WHAT IT
REALLY IS: OUR BEST INSTINCTIVE, VISCERAL RESPONSE TO THE DATA,

  OF COURSE, WE DON'T NEED STATISTICAL CURVES THAT GO SHARPLY UP OR
DOWN TO UNDERSTAND THE IMPACT A DISABLED INFANT HAS UPON ITS PARENTS
AND UPON THE ATTENDING MEDICAL AND SOCIAL SERVICES STAFFS. GIVING
BIRTH IS A HIGHLY COMPLEX EMOTIONAL, PSYCHOLOGICAL, AND PHYSICAL EVENT
EVEN WHEN A HEALTHY BABY IS DELIVERED, HOW MUCH MORE COMPLEX IT CAN BE


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WHEN THE INFANT IS DISABLED, ALL THE PERSONS INVOLVED -- THE FAMILY

AND THE HOSPITAL STAFF -- THEY ALL SHARE THE FEELINGS OF GUILT AND

INADEQUACY,

  BUT MEDICINE AND SOCIAL SERVICE CANNOT TAKE THE PLACE OF THE

FAMILY, RATHER, THEY SHOULD USE THEIR TALENTS AND EXPERTISE TO HELP

THE FAMILY SURVIVE AND FUNCTION, TO RENEW ITS STRENGTH AND FOSTER ITS

COHESION, FOR IT WILL BE THE FAMILY THAT WILL PROVIDE THE LONG-TERM

HELP REQUIRED BY THE DISABLED INFANT. THE FAMILY'S DAILY DECISIONS,

ROUTINES, AND RELATIONSHIPS WILL TRANSLATE INTO THE SUPPORT, THE

THERAPY, THE SPECIAL EDUCATION, THE RECREATIONAL EFFORTS, AND ALL THE

OTHER ASPECTS OF THE BEST POSSIBLE QUALITY OF LIFE FOR THE DISABLED

CHILD.

  THE OVERWHELMING NUMBER OF PARENTS OF HANDICAPPED NEWBORNS -- OVER

95 PERCENT -- TAKE RESPONSIBILITY FOR THEIR CHILDREN, TAKE THEM HOME,

AND TRY TO ABSORB THEM INTO THEIR FAMILY LIFE, OUR CHALLENGE IS TO

HELP THOSE PARENTS UNDERSTAND, LOVE, AND CARE FOR THEIR CHILD,

  HOW DO WE DO THAT? WITHOUT INFRINGING ON ANY OF THE PRESENTATIONS

SCHEDULED FOR THIS WORKSHOP, I WOULD LIKE TO SUGGEST THAT THE BEST

ANSWER -- WHATEVER IT IS -- MUST DRAW UPON THESE PREREQUISITES:


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THE MEDICAL AND SOCIAL SERVICES STAFFS THEMSELVES MUST BE FULLY
KNOWLEDGEABLE ABOUT THE PARTICULAR DISEASE PROCESS OR DISABLING
CONDITION AFFECTING THE NEWBORN... THEY MUST KNOW THE CONDITION OF
THE INFANT ITSELF VERY WELL, THE HEALTH OF ITS ORGAN SYSTEMS, FOR
EXAMPLE, AND ITS SENSORY AND SPEECH POTENTIAL..,AND THE STAFFS MUST
BE ABLE TO PUT THAT INFORMATION TOGETHER INTO A DISCREET, PERSONAL
PORTRAIT OF THEIR INFANT PATIENT,

  THESE PREREQUISITES CAN USUALLY BE MET. HOSPITALS ARE REALLY VERY
HETEROGENEOUS INSTITUTIONS AND THEIR STAFFS EXHIBIT A FULL RANGE OF
KNOWLEDGE AND EXPERIENCE,  BUT THERE HAS TO BE A CERTAIN ADMINISTRATIVE
TOUGHNESS OF JUDGMENT THAT WILL MAKE THE MOST CAPABLE HANDS IN THE
INSTITUTION AVAILABLE TO DISABLED INFANTS AND THEIR FAMILIES, I THINK

THAT IS THE KEY,

  AS I INDICATED EARLIER, EVEN IF THEY DO GET THE BEST POSSIBLE
GUIDANCE, DISABLED INFANTS AND THEIR FAMILIES MAY STILL FACE A FUTURE
OF ENORMOUS HUMAN CHALLENGES IN THEIR COMMUNITIES AND IN THEIR OWN

HOMES.  HOW MUCH MORE DIFFICULT THEIR LIVES WILL BE, THEN, IF THE
INITIAL HELP THEY RECEIVE FROM THE HOSPITAL STAFFS IS NOT THE VERY

BEST THAT'S AVAILABLE,  STAFF EXCELLENCE, THEREFORE, MUST FORM THE
BASIS OF ALL OUR PROCEDURES, ROUTINES, AND WORK-PLANS,


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  WELL, WHAT MIGHT BE SOME OF THE QUALITIES OR ACTIONS THAT

DISTINGUISH A CONCERNED AND CARING STAFF? WHAT MAKES THEM EXCELLENT?

IS EXCELLENCE ACHIEVED THROUGH REVELATION OR THROUGH SENSITIVITY AND

HARD WORK? I CAN TELL YOU THAT IT IS NOT THROUGH REVELATION, A GOOD

STAFF IS OPEN TO THE NEEDS OF ITS PATIENTS AND DRAWS LIBERALLY FROM

THE STRENGTHS OF ITS OWN MEMBERS,  I KNOW THAT'S TRUE BECAUSE THAT IS

HOW THE MEDICAL AND SOCIAL SERVICE STAFFS HERE AT CHILDREN'S HAVE

EVOLVED OVER THE YEARS,

  FOR A LONG TIME -- SOME 35 YEARS -- IT WAS MY PRIVILEGE TO SERVE

WITH THE STAFF HERE AT C,H,O,P,  DURING THAT TIME A CONSENSUS SEEMED

TO HAVE EVOLVED, A CONSENSUS OF PRINCIPLES THAT UNDERLAY THE WAY WE

CARED FOR OUR DISABLED NEWBORN PATIENTS AND THEIR FAMILIES, THESE

PRINCPLES ARE NOT WRITTEN ANYWHERE . . mN0 STAFF MEETING WAS EVER ASKED

TO VOTE THEM UP OR DOWN ,,,AND THEY WERE NEVER DELIVERED TO US ON THE

BOARD OF TRUSTEES LETTERHEAD, YET, IN RETROSPECT I BELIEVE THESE FEW

PRINCIPLES DID HAVE A STRONG THOUGH UNSPOKEN POWER AMONG US, AND I

VENTURE TO SAY THEY ARE PRACTICED HERE STILL,

  THE FIRST PRINCIPLE IS TO OBTAIN OPEN, DIRECT, AND PERSONAL

COMMUNICATIONS WITH THE PARENTS OF A DISABLED NEWBORN,


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  MOST DELIVERIES IN THIS COUNTRY ARE TROUBLE-FREE AND MOST INFANTS

ARE HEALTHY,  HENCE, IT IS UNDERSTANDABLE WHEN MEDICAL STAFFS ARE

COURTEOUS AND CHEERFUL -- ALMOST BREEZY AT TIMES -- AND QUITE SKILLED

AT KEEPING THEIR PATIENT RELATIONS BRIEF AND SUPERFICIAL, AND, TO BE

FAIR, I THINK MOST PATIENTS WOULD JUST AS SOON HAVE IT THIS WAY, TOO,

  BUT THEN THERE IS THE INFANT BORN WITH DOWN'S SYNDROME, THE SPINA

BIFIDA BABY, THE CHILD WITH SOME CONGENITAL DEFECT -- A DAMAGED ORGAN

SYSTEM, A MISSING OR DEFORMED LIMB -- OR ONE OF ANY NUMBER OF OTHER

DISABLING CONDITIONS, AT THAT POINT, THE PHYSICIAN-PATIENT RELATION-

SHIP IS NO LONGER CASUAL, IT CANNOT BE FLIP, AND IT WON'T BE SHORT-

TERM, THE PHYSICIAN HAS TO TRANSLATE THAT COMPLICATED MEDICAL

TERMINOLOGY INTO WORDS THE PARENTS CAN UNDERSTAND -- AND NOT FEAR,

  I THINK IT IS ESSENTIAL FOR THE ATTENDING PHYSICIAN IN PARTICULAR

TO SIT DOWN WITH THE FAMILY AND CAREFULLY GO THROUGH THE NATURE OF THE

INFANT'S CONDITION, WHAT THE MEDICAL EXPERIENCE WITH SUCH A CONDITION

HAS BEEN SO FAR, WHAT KINDS OF OPTIONS ARE OPEN FOR IMMEDIATE ACTION,

AND WHATS KIND OF OPTIONS MAY BE OPEN TO THE FAMILY AND THE PHYSICIAN

LATER ON.


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  THE FIRST MEETING WITH PARENTS SHOULD FOCUS ENTIRELY ON DESCRIBING
THE INFANT'S PARTICULAR PROBLEM, THE PARENTS NEED TO UNDERSTAND THIS
AS COMPLETELY AS POSSIBLE, IN ORDER TO RATIONALLY TACKLE FAMILY, FINAN-
CIAL, EMOTIONAL, AND OTHER ISSUES LATER ON, AT THIS TIME, PHYSICIANS
AND OTHER STAFF NEED TO BE EXTREMELY CAUTIOUS ABOUT COMMENTING ON THE
"QUALITY OF LIFE" THE TINY PATIENT i/ILL ULTIMATELY ENJOY. NO ONE,
AFTER ALL, CAN PREDICT JUST HOW HAPPY OR SMART OR ACTIVE ANOTHER PERSON
MAY BE AT SOME FUTURE TIME IN HIS OR HER LIFE. THE STAFF OUGHT NOT TO

TRY,

  THE PHYSICIAN SHOULD MEET WITH THE FAMILY IN PRIVATE AND IN A
SETTING THAT IS NOT MEDICALLY OR SOCIALLY INTIMIDATING. THE TIMING
MUST BE SUCH THAT BOTH PARENTS ARE AVAILABLE AND NOT PRESSED BY ANY
OTHER APPOINTMENTS, UNLESS THE PARENTS INSIST, IT IS BEST NOT TO HAVE
ANY "VERY GOOD FRIENDS" OR CLOSE RELATIVES PRESENT DURING THE FIRST
MEETING OR TWO, THE PARENTS NEED TO RESPOND NATURALLY AND NOT BE
WORRIED ABOUT ANOTHER'S JUDGMENT OF HOW WELL THEY HANDLE IT, NOR
SHOULD THEY HAVE THE OPPORTUNITY TO SHIFT THE PROBLEM TO A THIRD
PARTY. THE PHYSICIAN MUST ALSO BE AVAILABLE AND HAVE ENOUGH TIME TO
WORK THROUGH ANY ESPECIALLY SENSITIVE INFORMATION, THEN THE PARENTS
NEED SOME TIME TO THEMSELVES, AS THEY BEGIN TO FACE THE FUTURE, BUT
THE PHYSICIAN AND OTHER STAFF SHOULD NEVER BE VERY FAR AWAY,


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  THERE ARE WAYS TO TRAIN MEDICAL STAFF -- PHYSICIANS OF u AGES, I

MIGHT ADD -- TO HELP THEM PUT ASIDE THEIR BREEZY OR CASUAL MANNER, WHEN

THE NEED IS CLEAR, AND SETTLE DOWN TO A CLOSE, COMPASSIONATE, HIGHLY

PERSONAL, AND POSSIBLY PROLONGED RELATIONSHIP WITH PARENTS WHO MAY BE

SETTING OUT ON A LONG AND INTRICATE JOURNEY IN HUMAN GROWTH,

  YOUNG PHYSICIANS ESPECIALLY NEED THIS KIND OF TRAINING, THEY WILL

HAVE JUST COME FROM AN EDUCATIONAL SYSTEM THAT MEASURES SUCCESS ALMOST

EXCLUSIVELY IN TERMS OF CURING AND REPAIRING PATIENTS AND RETURNING

THEM TO A NORMAL STATE.  BUT MANY DISABLED NEONATES CANNOT BE "CURED"

OR READILY "REPAIRED,"  THEY MAY NEVER APPROACH WHAT MIGHT BE CON-

SIDERED A "NORMAL" STATE OF FUNCTIONING AT ANY TIME IN THEIR LIVES --

AND THEIR VERY LIVES MAY BE BRIEF,

  I HAVE PUT THIS PRINCIPLE FIRST -- THE NEED TO ESTABLISH DIRECT,

CLOSE, CANDID, AND PERSONAL COMMUNICATIONS -- BECAUSE IT IS SURELY THE

ONE UPON WHICH ALL OTHERS MUST STAND.

  A SECOND PRINCIPLE THAT IS PRACTICED BY AN EXCELLENT STAFF IS THIS:

THE STAFF MUST RECOGNIZE AND UNDERSTAND THE NATURAL RESPONSES OF

PARENTS TO THEIR DISABLED BABY .,,THEIR FEELINGS OF SADNESS, GUILT,


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ANGER, EVEN OF SHAME, THE PARENTS WILL BE CONCERNED ABOUT THE JUDG-

MENTS OF THEIR NEIGHBORS AND THEIR FRIENDS, AND THEIR QUESTIONS BEGIN

POURING OUT:

"WHAT DOES IT MEAN?",.,"WILL OUR BABY LIVE?",,,"WHAT KIND OF LIFE

WILL OUR CHILD HAVE?",, . "IS IT THE RESULT OF SOMETHING WE DID?",, .

"IS IT BECAUSE WE SHOULD HAVE DONE SOMETHING AND DIDN'T?"

THE QUESTIONS MAY COME IN A RUSH, BUT THE ANSWERS SHOULD BE GIVEN ONLY

AFTER A GREAT DEAL OF CAREFUL THOUGHT, THE STAFF NOW REPRESENTS NOT

ONLY MEDICAL CARE -- BUT THE OUTSIDE WORLD AS WELL, IT MAY NOT BE

FAIR FOR THE STAFF TO HAVE TO CARRY THIS ROLE RESPONSIBILITY ALSO,

BUT IN SUCH INTENSE HUMAN SITUATIONS, A STAFF HAS MANY ASSIGNMENTS AND

FEW CHOICES,

  NO MATTER HOW SERIOUS THE INFANT'S CONDITION IS AND NO MATTER HOW

THE MEDICAL TEAM RESPONDS, IT IS ESSENTIAL THAT STAFF MEMBERS NOT

TRANSMIT IN ANY WAY A SENSE OF HOPELESSNESS OR FUTILITY OR, IN EFFECT,
GO INTO MOURNING FOR A CHILD WHO IS STILL IS VERY MUCH ALIVE, HOWEVER

SEVERE ITS PHYSICAL OR MENTAL BURDEN,

  WE ARE OUTRAGED AT PARENTS WHO PHYSICALLY ABANDON THEIR CHILDREN,,,

AND I AM OUTRAGED AT PHYSICIANS WHO INTELLECTUALLY ABANDON THEIR

PATIENTS,  NO MATTER HOW SOPHISTICATED OUR DIAGNOSTIC TECHNOLOGY, IT


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CAN STILL BE WRONG,  BY THE SAME TOKEN, THE SURVIVAL POWER OF THE HUMAN

BEING -- EVEN IN ITS TINY NEWBORN STATE -- CAN BE TRULY AWESOME, WE
NEED TO TRANSMIT THIS UNDERSTANDING TO PARENTS, EVEN AS THEY VERBALIZE
THEIR MOST TROUBLING THOUGHTS,

  BUT I HAVE A PARTICULAR CAVEAT TO RAISE HERE, I WANT TO EMPHASIZE
THAT RESTRAINING ONE'S SELF FROM SPEAKING IN TERMS OF HOPELESSNESS IS
NOT THE SAME THING AS OFFERING FALSE HOPES TO CONFUSED AND FRIGHTENED

PARENTS.  WE NEED TO BE CAUTIOUS, HONEST, AND OBJECTIVE WITH PARENTS,
AND WE NEED TO BUILD ON THEIR STRENGTHS,

  I DON'T WANT TO GIVE A FALSE PICTURE HERE, WE CAN HELP PARENTS
BECOME A CLOSE AND LOVING FAMILY RIGHT AT THE POINT WHERE THEY ARE CON-
FRONTING A DIFFICULT FUTURE,  BUT THAT HELP WILL ONLY WORK IF THE
PARENTS ARE CAPABLE AND M WANT IT TO WORK. SOME AREN'TmAND DON'T.
A VERY SMALL PERCENTAGE OF OUR ADULT POPULATION IS NOT EMOTIONALLY OR
MENTALLY COMPETENT, AND THEY THEMSELVES REQUIRE SOCIETY'S ATTENTION,
SOME OF THEM BEAR CHILDREN AND IMMEDIATELY SURRENDER THEIR INFANTS TO
THE STATE, EITHER VOLUNTARILY OR INVOLUNTARILY, SOME PARENTS ABANDON
THEIR CHILDREN AS SOON AS POSSIBLE, AND SOME KEEP THEM -- BUT NOT FOR

VERY LONG,  THIS LAST GROUP NEEDS MUCH MORE OF OUR ATTENTION,


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  AT THIS TIME WE DO NOT HAVE A CLEAR IDEA OF THE NUMBER OF MOTHERS

WHO TAKE HOME INFANTS BORN WITH SINGLE OR MULTIPLE DISABILITIES,,,WHO

TRY TO ABSORB THE INFORMATION ABOUT THE CARE THEY NEED,,,OR WHO TRY TO

COPE WITH ALL THE ATTENDANT PROBLEMS -- BUT WHO ULTIMATELY DECIDE TO

SURRENDER THEIR CHILDREN FOR ADOPTION OR INSTITUTIONALIZATION,

  IT HAS BEEN MY EXPERIENCE THAT MANY OF THESE DECISIONS TO GIVE UP

A CHILD WERE MADE BY PARENTS WHO WOULD HAVE BEEN REWARDED A HUNDRED-

FOLD IF THEY HAD NOT GIVEN IT UP BUT INSTEAD HAD HELD ON FOR JUST A

LITTLE LONGER AND HAD BEEN GIVEN JUST A LITTLE ADDITIONAL SUPPORT.

AND THE CHILD, IN THE OVERWHELMING NUMBER OF SUCH CASES, WOULD ALSO

HAVE HAD A CHANCE AT A MORE FULFILLED AND FULFILLING LIFE.

  THE THIRD PRINCIPLE EMPHASIZES THE FULL PARTICIPATION OF THE

PARENTS AND SIBLINGS IN ALL THE PROCESSES OF MEDICAL CARE, IN AS MANY

WAYS AS POSSIBLE, A STAFF NEEDS TO DEMONSTRATE TO THE PARENTS THAT

THEY ARE NEEDED AS PARTNERS,  IT IS NOT ARTIFICIAL, NOT SOME RUSE TO

TRICK THEM INTO DOING SOMETHING THEY OUGHT NOT TO DO, QUITE THE

REVERSE,  THERE IS NO SUBSTITUTE FOR A LOVING, CARING FAMILY.

  AS SOON AS POSSIBLE, THE PHYSICIAN AND OTHER STAFF MEMBERS SHOULD

TRY TO GET THE CHILD LITERALLY INTO THE HANDS OF THE FAMILY, A PARENT


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STARING THROUGH A PANE OF GLASS AT A LITTLE BABY IN A COVERED ISOLETTE
OVER IN THE CORNER IS JUST NOT MY IDEA OF "FAMILY TOGETHERNESS." I
WAS IN THE HABIT OF URGING PARENTS TO VISIT THEIR CHILD AS SOON AND AS
OFTEN AS POSSIBLE, OTHER FAMILY MEMBERS -- GRANDPARENTS, SIBLINGS,

AUNTS, OR UNCLES -- WERE ALSO ENCOURAGED TO STOP BY, I WAS PROUD OF
THE BABY AND I WANTED THEM TO BE, TOO,
            EVEN THOUGH THE BABY MAY BE
BANDAGED, INTUBATED, MONITORED, AND FED WITH A HYPERALIMENTATION LINE,
THE PARENTS CAN AND SHOULD TOUCH THE CHILD.JF POSSIBLE, THEY SHOULD

ALSO HOLD IT AND CUDDLE IT,

  AS A LAST PRINCIPLE -- FOR MY PURPOSES THIS MORNING, AT ANY RATE --
I WOULD SAY THAT THE MEDICAL AND SOCIAL SERVICE STAFFS NEED TO PLAY A
POSITIVE, ACTIVE ROLE IN LINKING UP THE CHILD AND ITS FAMILY WITH THE
AVAILABLE SOCIAL AND MEDICAL SUPPORT GROUPS IN THE COMMUNITY,

  IN OTHER CONTEXTS AND FOR MORE ROUTINE SITUATIONS WE ALL ADVOCATE
CONTINUITY OF CARE AND TOTAL CARE FOR OUR PATIENTS AND CLIENTS, HOW
MUCH MORE IMPORTANT IS THIS KIND OF APPROACH FOR INFANTS WITH DISABILI-

TIES,  THE MEDICAL AND SOCIAL SERVICE STAFFS WHO TAKE THIS PRINCIPLE
SERIOUSLY HAVE THE SET OF MIND AND THE FIRM PROFESSIONAL COMMITMENT TO
BECOME ADVOCATES FOR THEIR PATIENTS AND THE PARENTS, IN THAT ROLE,
THEY HELP MAKE THE VITAL CONNECTIONS BETWEEN HOME AND COMMUNITY

RESOURCES.


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  PEOPLE WHO WORK IN HOSPITALS, CLINICS, SCHOOLS OR OTHER SERVICE
INSTITUTIONS ARE USUALLY FAMILIAR WITH MOST OF THE COMMUNITY SERVICES

NETWORK -- AND VERY OFTEN THEY ASSUME THAT EVERYONE ELSE HAS THE SAME

INFORMATION.  BUT, IN POINT OF FACT, MOST PEOPLE DO NOT,

  MOST PEOPLE MAY, ON OCCASION, HAVE USED ONE OR ANOTHER SOCIAL
SERVICE OR HEALTH AGENCY OR MAY EVEN HAVE REGULARLY CONTRIBUTED TO
CERTAIN VOLUNTARY ORGANIZATIONS CONCERNED WITH A PARTICULAR DISEASE OR
DISABILITY, BUT WHEN FACED WITH THE IMMEDIATE NEED TO GET INFORMATION,
APPLY FOR HELP, REQUEST CERTAIN RESOURCES, MAKE CONNECTIONS, MAKE DECI-

sIorc3 -- MUCH OF THEIR PAST EXPERIENCE AND KNOWLEDGE BECOMES SOMEHOW'

DISJUNCTIVE,

  IF THE PARENTS AND THE STAFF HAVE FORMED A RELATIONSHIP BASED UPON
THE PRINCIPLES I'VE TALKED ABOUT THIS MORNING -- EVEN IF THEY HAVE
ALREADY MADE A FIRM COMMITMENT TO CARE FOR THEIR CHILD AND GIVE IT ALL

THE LOVE IT NEEDS -- THEY MAY STILL BE TOTALLY OVERWHELMED BY THE
BYZANTINE COMPLEXITY OF OUR SOCIAL SERVICE DELIVERY SYSTEM, SOCIETY
MAY YET SEEM TO BE CONSPIRING AGAINST THEM,


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  IN MY PREVIOUS ROLE AS A PEDIATRIC SURGEON, I FREQUENTLY WAS THE
PERSON WHO WORKED SIDE-BY-SIDE WITH PARENTS, NEGOTIATING HELP FROM A
WIDE NETWORK OF PRIVATE, PUBLIC, FREE, AND FEE-FOR-SERVICE PROVIDERS,

IT IS NOT A SURGEON'S ROLE,  FRANKLY, SURGEONS ARE REALLY NOT VERY GOOD
AT IT, UNFORTUNATELY, THEY ARE NOT ALONE, MOST PHYSICIANS ARE JUST
NOT THAT FAMILIAR WITH THE KIND OF HELP THAT'S AVAILABLE, AT BEST THEY
MAY ONLY HAVE A SENSE THAT THERE Is SOME HELP OUT THERE, BUT I HONEST-
LY DON'T BELIEVE IT TAKES THAT MUCH EFFORT TO FIND THE APPROPRIATE
SOCIAL SERVICE AGENCY FOR A DISABLED INFANT AND ITS FAMILY,

  I THINK IT'S IMPORTANT TO REMEMBER THAT "SOCIAL SERVICES" AS SUCH
ARE NOT EXCLUSIVELY THE PROVINCE OF THE "SOCIAL SERVICE WORKER."
CERTAINLY WE EXPECT A GREATER PROFESSIONALISM FROM A PERSON TRAINED IN
THIS FIELD, BUT THERE ARE MANY OTHER DISCIPLINES WITHIN THE HOSPITAL
COMMUNITY THAT CAN BE HELPFUL, TOO. I AM THINKING IN PARTICULAR OF
THAT NEW AND EXTRAORDINARY BREED OF INDIVIDUAL KNOWN AS THE "NEONATAL

INTENSIVE CARE NURSE,"  THEY BRING TO THEIR JOB A TOTAL COMMITMENT TO

CHILD HEALTH AND WELFARE,,, NOT IN THE ABSTRACT, BUT IN THE REAL WORLD
OF DAY-TO-DAY CARE FOR TINY VULNERABLE, RUPTURED LIVES, I DON'T THINK


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IT'S AN OVER-STATEMENT TO SAY THAT MANY OF THESE NURSES DISPLAY VERY
STRONG PARENTAL FEELINGS TOWARD THEIR DISABLED PATIENTS AND I HAVE
OFTEN INVITED ONE OF THEM TO JOIN ME IN ONE OR ANOTHER OF MY PARENT

CONFERENCES.

  I SHOULD ADD THAT, WHEN I DID TAKE PART IN THAT EFFORT TO SECURE
COMMUNITY SOCIAL AND HEALTH SERVICES FOR MY PATIENTS, THE OCCASION WAS
USUALLY OF MY OWN CHOOSING, BASED UPON A CLOSENESS THAT MAY HAVE
DEVELOPED AMONG ME, MY PATIENT, AND ITS PARENTS, ALSO, I WAS IN THE
MIDDLE OF THESE SITUATIONS FOR MANY, MANY YEARS AND SAW A NUMBER OF
TODAY'S SERVICES BEING DEVELOPED FROM SCRATCH, ALSO, I MUST CONFESS

TO A LITTLE PREJUDICE,  I THOUGHT THEN -- AND I CONTINUE TO THINK --
THAT THE "SOCIAL SERVICES" AVAILABLE FROM AMONG ALL WHO TRIED TO
PROVIDE IT AT THE CHILDREN'S HOSPITAL OF PHILADELPHIA WAS -- AND STILL

IS -- JUST FIRST-RATE.

  BUT WE NEED TO KEEP OUR EYES WIDE OPEN, WHEN WE INTRODUCE THE
PATIENT'S FAMILY TO THE WORLD OF SOCIAL SERVICES, YOU CAN HELP MAKE
GOOD THINGS COME TO PASS, BUT YOU CANNOT INSURE THAT GOOD THINGS WILL

COME TO PASS,  FAMILIES HAVE RICH AND VARIED BIOGRAPHIES, JUST AS

INDIVIDUAL PEOPLE DO,  FORTUNES RISE AND FALL, CHILDREN DO OR DO NOT

ALL GET ALONG WITH EACH OTHER,  MOTHERS MAY OR MAY NOT SUCCEED IN


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DEVELOPING A STRONG BOND WITH THEIR DISABLED INFANTS. HUSBANDS AND
WIVES MAY OR MAY NOT CLEAVE TO EACH OTHER TILL DEATH DOES THEM PART,

AND THE DISABLED INFANT,.. GROWING CHILD.,,YOUNG ADULT,.,AND ADULT ARE
PART OF THAT EVOLUTION, THAT MIRACLE OF HUMAN GROWTH, AND, LIKE ALL
MIRACLES, YOU CANNOT PREDICT HOW THIS ONE WILL TURN OUT EITHER,

  THAT WORD -- "MIRACLE" -- IS BEING WORKED VERY HARD THESE DAYS, IT
SEEMS TO BE IN THE LEXICON OF EVERY REPORTER IN THE HOSPITAL AUDITORIUM

IN SALT LAKE CITY, UTAH,  IT TENDS TO BE USED WITH EVERY NEW DEVELOP-
MENT IN MEDICAL TECHNOLOGY, REGARDLESS OF THE OUTCOMES. CERTAINLY
THERE MAY BE MUCH THAT SEEMS TO BE "MIRACULOUS" ABOUT INFANT INTENSIVE
CARE TECHNOLOGY, FOR EXAMPLE, BUT THE OUTCOMES ARE ALSO MIXED,

  I MENTIONED A FEW MOMENTS AGO THAT THE INFANT MORTALITY RATE IS
COMING DOWN AND THAT, AS NEAR AS WE COULD TELL, MOST OF THE BABIES WE
ARE SAVING ARE HEALTHY BABIES.  BUT THE PICTURE IS REALLY NOT THAT

SIMPLE.

  A NUMBER OF THE INFANTS WE ARE SAVING ARE PREMATURE OR ARRIVE WITH
A LOW BIRTH WEIGHT OR ARE I'MMATURE IN SOME ASPECT OF THEIR DEVELOPMENT

AND EXHIBIT RESPIRATORY DISTRESS,  THEY MAY BE IMMEDIATELY TAKEN TO AN


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INFANT INTENSIVE CARE UNIT, OR TRANSPORTED TO ONE, AND PUT ON A RESPIR-

ATOR.  THESE BABIES ARE USUALLY THE ONES THAT MIGHT NOT HAVE SURVIVED

THEIR BIRTH JUST A FEW YEARS AGO. TODAY THEY ARE ALIVE, BUT THEY

REPRESENT A NEW CATEGORY OF DISABLED CHILD -- A CATEGORY CREATED BY

THE I,I,C,U, TECHNOLOGY, THE ALTERNATIVE FOR SUCH BABIES HAD ONCE

BEEN DEATH,

  AT PHILADELPHIA CHILDREN'S, WHEN WE WERE DEVELOPING THIS LIFE-

SAVING TECHNOLOGY, THE COST OF IN-PATIENT THERAPY WAS ABOUT $1,000 PER

DAY PER RESPIRATOR-DEPENDENT CHILD, ONE SURVEY SHOWED THAT, IN THE

12-MONTH PERIOD FROM 1980 TO 1981, THERE WERE 235 SUCH CHILDREN IN THE

COMMONWEALTH OF PENNSYLVANIA, A CHILD WAS "DEPENDENT" IF IT HAD TO BE

ON THE RESPIRATOR FOR NOT LESS THAN 4 HOURS A DAY FOR 30 DAYS OR MORE

IN THAT CALENDAR YEAR,  A LITTLE SIMPLE ARITHMETIC TELLS YOU THAT THE

MINIMUM COST FOR THE CARE OF THESE CHILDREN THAT YEAR HAD TO BE NOT

LESS THAN $7,000,000 MILLION FOR THE CARE OF RESPIRATOR-DEPENDENT

CHILDREN WHO FIT THE SURVEY'S MINIMUM DEFINITION.

  THE COST IS VERY HIGH, NOT ONLY IN DOLLARS BUT IN FAMILY STRESS AS

WELL, THE CHILD IS DENIED THE INITIAL, VITAL ATTENTION OF THE MOTHER.

OPPORTUNITIES FOR EARLY BONDING ARE GONE, THE ENTRY OF THAT CHILD INTO

ITS FAMILY IS DELAYED,, . AND, DEPENDING UPON THE CIRCUMSTANCES, POSSIBLY

DELAYED FOREVER,


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  I KNOW OTHERS ON THE PROGRAM TODAY AND TOMORROW ARE GOING TO SPEAK

MORE PARTICULARLY TO THIS EXAMPLE.  BUT I WANT TO UNDERSCORE ITS SIGNI-

FICANCE:

  FIRST, THE RESPIRATOR-DEPENDENT CHILD IS A CREATURE OF OUR NEW
TECHNOLOGY AND, IN FACT, NEEDS ADDITIONAL TECHNOLOGY TO RELIEVE THE
FIX OF DEPENDENCY THAT IT IS IN. THIS IS NO LONGER A UNIQUE PROBLEM

FOR MEDICINE,  IT IS VERY USEFUL, THEREFORE, TO TAKE A CLOSE LOOK AT
THE PROBLEM OF THE RESPIRATOR-DEPENDENT CHILD IN ORDER TO SEARCH OUT
THOSE CONCEPTS AND APPROACHES THAT MAY PRODUCE WORKABLE SOLUTIONS IN
OTHER, SIMILAR SITUATIONS, THE WAY WE HANDLE THIS PARTICULAR PROBLEM
MAY IN FACT BE A KIND OF MODEL FOR THE WAY WE MIGHT DEAL WITH MANY
OTHER CONGENITAL ANOMALIES THAT TAX OUR HUMAN AND MATERIAL RESOURCES,

  SECOND, THE PROBLEM OF THE RESPIRATOR-DEPENDENT CHILD CONCERNS

TECHNOLOGY.,,BUT NOT EXCLUSIVELY, FUNDAMENTAL TO THE HANDLING OF THIS
PROBLEM, I BELIEVE, ARE THE SEVERAL PRINCIPLES PROMOTING STAFF-FAMILY
INTERPLAY. THIS IS WHERE TECHNOLOGY LEAVES OFF AND BASIC HUMANITY

TAKES OVER,

  THIRD, IT PROVIDES US WITH A RATHER CLEAR ASSESSMENT OF HOW

ADEQUATE -- OR INADEQUATE -- OUR SOCIAL SERVICES MAY BE NOT JUST FOR

PATIENT CARE BUT FOR TOTAL FAMILY CARE AS WELL,


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  AND FOURTH, IT IS POSSIBLE FOR US TO BEGIN SOME LONGITUDINAL
STUDIES OF HOW THESE PATIENTS DO BOTH IN THE HOSPITAL SETTING AND IN
THE HOME, WHAT THE COSTS ARE AT EACH PLACE, WHAT THE EFFECTS ARE OF
CHANGES IN TECHNOLOGY, WHAT THE COST/PRICE HISTORY IS, AND SO ON,

  SUCH AN OPPORTUNITY RARELY APPEARS IN WHICH THESE FOUR ELEMENTS
ARE PRESENT, BUT THIS WORKSHOP DOES OFFER US A KIND OF SURROGATE

OPPORTUNITY,  SO I AM DELIGHTED TO SEE ALL OF YOU HERE, LOOKING HARD
AT THE OVERALL PROBLEM OF PROVIDING BETTER CARE FOR DISABLED CHILDREN
AND THEIR FAMILIES, AND ALSO FOCUSING IN ON THE SPECIFIC EXAMPLE -- OR

"MODEL" -- OF THE CARE FOR THE RESPIRATOR-DEPENDENT CHILD AND ITS

FAMILY,

  AGAIN, LET ME THANK EACH ONE OF YOU FOR COMING TODAY, FOR CONTRIB-
UTING YOUR TIME, KNOWLEDGE, AND EXPERIENCE -- AND YOUR BASIC HUMANITY

-- TO THIS PROBLEM,  IN THE LONG RUN, I THINK THAT THE WAY WE DEAL WITH

PROBLEMS LIKE THIS REVEALS JUST WHAT KIND OF A SOCIETY WE ARE,