PRIVATE THOUGHTS ON PUBLIC ISSUES

     BY
C, EVERETT KOOP, M,D,
SURGEON GENERAL

     US, PUBLIC HEALTH SERVICE
US, DEPARTMENT OF HEALTH AND HUMAN SERVICES

PRESENTED TO THE ROYAL CHILDREN'S HOSPITAL
       GLASGOW, SCOTLAND
       SEPTEMBER 30, 1987


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(GREETINGS TO HOSTS, GUESTS, FRIENDS, ETCJ

  IT IS AN HONOR AND A GREAT PERSONAL PLEASURE FOR ME TO BE
HERE THIS EVENING,

   I WANT TO TALK ABOUT MEDICINE AND PUBLIC SERVICE AND
PERSONAL CODES OF CONDUCT AND HOW ALL THREE MAY COINCIDE,

  AND I'D LIKE TO DO THIS BY RECOUNTING SEVERAL BRIEF STORIES
THAT CENTER AROUND CHILDREN, SOME OF THEM HAD NAMESmAND SOME
DID NOT,

  BUT EACH ONE OF THEM TOUCHED A CHORD IN MY OWN SOUL AS A
DOCTOR AND EACH ONE HELPED TO SHAPE THE KIND OF SURGEON GENERAL I .
HAVE BECOME,


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  I MUST CONFESS THAT, BACK IN 1981, WHEN PRESIDENT REAGAN
ASKED ME TO JOIN THE GOVERNMENT TO BE THE SURGEON GENERAL OF THE
US, ?U3LIC HEALTH SERVICE, I DID NOT GO THROUGH AS MUCH SOUL-
SEARCHING AS PERHAPS I SHOULD HAVE,

  I HAD READ BOOKS AND ARTICLES ABOUT -- AND BY -- PRIVATE
CITIZENS WHO HAD TAKEN THEIR TURN AT PUBLIC SERVICE, BUT, I NOW
REALIZE, I HADN'T REALLY ABSORBED THEIR LESSONS ALL THAT WELL,
MY DECISION IN 1981 WAS NOT THE RESULT OF A CAREFULLY 3ALANCED
ARGUMENT OF PRO AND CON,

  BUT IN MY OWN DEFENSE, I MUST SAY THAT IT IS RARE THAT
ANYONE CAN BE ALTOGETHER RATIONAL, IF THEY ARE ASKED BY THE
PRESIDENT OF THE UNITED STATES TO DO A JOB,


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  B'iT LET ME BE QUITE CLEAR ABOUT THIS, I LOVE EVERY MINUTE
OF MY JOB, THE FRUSTRATIONS ARE FAR OUTWEIGHED BY THE
SATISFACTIONS OF ACHIEVEMENT, I CAN TELL YOU UNEQUIVOCALLY THAT
I HAVE NO REGRETS ABOUT ACCEPTING PRESIDENT REAGAN'S INVITATION,

   IN ADDITION, MY PARTICULAR EXPERIENCE WAS SOMEWHAT
SPECIAL, WHEN THE PRESIDENT NOMINATED ME FOR THE POST OF SURGEON
GENERAL, I WAS NOT ONLY GOING TO BE THE OLDEST PERSON EVER TO
HAVE THAT JOB -- A MATTER OF SOME CONTENTION AT THE TIME -- BUT I
HAD A REPUTATION FOR HOLDING CERTAIN CONTROVERSIAL VIEWS, LET ME
CORRECT THAT:  I HELD CERTAIN VIEWS WHICH OTHER PEOPLE FOUND TO
BE CONTROVERSIAL,

  FOR ONE THING, I WAS -- AND STILL AM -- AN ADVOCATE FOR
PEOPLE WHO ARE PHYSICALLY OR MENTALLY DISABLED, THEY ARE
SOMETIMES CALLED "THE HANDICAPPED," BUT THAT'S A MISTAKE, IT IS
SOCIETY THAT PLACES A HANDICAP ON PEOPLE WHO ARE DISABLU,
SOCIETY CAN ALSO LIBERATE THEM OR HELP THEM OVERCOME THEIR
DISABILITIES,  BUT DISABLED PEOPLE ARE NOT -- IPSO FACTO --
HANDICAPPED PEOPLE,


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  NATURALLY, AS SOMEONE HOLDING THAT POINT OF VIEW, I AM
AUTOMATICALLY ON ONE SIDE OF AN ARGUMENT -- ANY ARGUMENT --
CONCERNING DISABLED PERSONS AND THEIR NEEDS AND THEIR RIGHTS,
AND I'VE NEVER HAD A PROBLEM CHOOSING MY SIDE,

  SOME CRITICS OF MY NOMINATION WERE ALSO CONVINCED THAT I
WOULD COME TO THE JOB OF SURGEON GENERAL WITH MANY PREJUDICES AND
PRE-CONCEIVED IDEAS ABOUT DISABLED PEOPLE, THEY THOUGHT I WOULD
HAVE A HARD TIME BEING "FAIR,"  IN OTHER WORDS, AS THE ADVOCATE
FOR THE DISABLED, I PROBABLY COULD NOT BE COUNTED ON TO EITHER
IGNORE THEM OR IN SOME OTHER WAY ACT AGAINST THEIR BEST
INTERESTS,

  AND I MUST SAY THAT MY CRITICS WERE ABSOLUTELY RIGHT, I
HAVE MADE NO BONES ABOUT WANTING TO BE AN ADVOCATE FOR THE
DISABLED COMMUNITY IN MY COUNTRY, AND I WAS -- AND I REMAIN --
THOROUGHLY SURPRISED AND DISTRESSED THAT SUCH A POSITION COULD BE
CONSIDERED EVEN FAINTLY SUSPICIOUS,


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  WELL, WHAT HAPPENS WHEN A PERSON WITH STRONG, CONTROVERSIAL,
AND PUBLICLY ADVERTISED IDEAS ENTERS GOVERNMENT? MUST YOU
DEPOSIT YOUR RELIGIOUS BELIEFS IN A BLIND TRUST? SHOULD YOU
DONATE YOUR MORAL VALUES TO CHARITY? BEFORE YOU MOVE TO
WASHINGTON, SHOULD YOU HIDE YOUR ETHICS IN AN ATTIC TRUNK?

I SAY, "NOwNONE OF THE ABOVE,"

  I TRULY BELIEVE THAT THE BEST APPROACH YOU CAN MAKE TO
PUBLIC SERVICE IS TO GIVE IT EVERYTHING YOU HAVE OF JUST WHAT IT
IS THAT YOU m HAVE,, ,TO DRAW TO THE FULLEST EXTENT FROM YOUR
STOREHOUSE OF KNOWLEDGE AND PERSONAL LIFE EXPERIENCE, ,,TO SQUEEZE
CUT EVERY OUNCE OF GOOD JUDGMENT, OF DEEP FELLOW FEELING, AND OF
LOVE OF COUNTRY,


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  IN OTHER WORDS, ENTERING PUBLIC SERVICE REQUIRES YOU TO BE
THE VERY BEST PERSON YOU KNOW HOW TO BE, WHICH IS THE SAME AS
BEING THE VERY BEST CITIm YOU KNOW HOW TO BE,

  SINCE NOVEMBER 1981, WHEN I WAS SWORN INTO MY POSITION, I'VE
HAD A NUMBER OF OPPORTUNITIES TO TEST MY ABILITY TO APPLY TO THE
PUBLIC BUSINESS THE STUFF OF WHO AND WHAT I AM,  I WILL ADMIT
THAT I WAS NOT ALWAYS QUICK ENOUGH OR SURE ENOUGH TO SEIZE SOME
OF THOSE OPPORTUNITIES AS THEY WENT BY, BUT WITH OTHERS I WAS
MORE SWIFT AND MORE FORTUNATE,

  I HAVE LEARNED THAT, WHEN AN IDEA'S TIME HAS COME -- AND IT
IS ON YOUR WATCH -- YOU MUST SEIZE THE MOMENT, ,,YOU MUST MOVE TO
DEVELOP IT,


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  LET ME BEGIN BY RECALLING THE SUMMER OF 1981, WHEN THE
CECKETT FAMILY OF CEDAR RAPIDS, IOWA, IN THE HEARTLAND OF THE
UNITED STATES, COMPLAINED OF THE ILLOGIC OF A GOVERNMENT PROGRAM
THAT SUPPORTS THE DELIVERY OF MEDICAL CARE,

  THEIR 3-YEAR-OLD DAUGHTER, KATIE BECKETT, WAS IN THE
HOSPITAL, WHERE SHE HAD BEEN FOR THE PAST YEAR AND A HALF,
RECOVERING FROM A SERIOUS CASE OF VIRAL ENCEPHALITIS

  IN THE HOSPITAL SHE WAS MAINTAINED ON RESPIRATOR THERAPY
AROUND THE CLOCK, SUCH CARE WAS COSTING $12,000 A MONTH, AND
YOU COULD ADD TO THAT THE COSTS OF THE BECKETT FAMILY GOING TO
AND FROM THE HOSPITAL TO SEE THEIR DAUGHTER AND TO KEEP THE BOND
OF LOVE STRONG BETWEEN THEM,


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  THEY WANTED TO TAKE HER HOME, BUT IF THEY DID, THEY WOULD
HAVE FORFEITED THE GOVERNMENT'S MEDICAID PAYMENT OF $12,000 A
MONTH FOR KATIE'S IN-PATIENT TREATMENT FOR THE SIMPLE REASON THAT
HOME CARE IS NOT COVERED,

  BUT THEY WERE ON THE RIGHT TRACK, BECAUSE IF KATIE WENT
HOME, THE COST OF CARE WOULD THEN DROP TO ONLY $2,000 A MONTH,
THE GOVERNMENT WOULD SAVE $10,000 A MONTH AND, MOST IMPORTANT OF
ALL, KATIE BECKETT WOULD BE BACK ONCE AGAIN IN THE FULL-TIME CARE
OF HER OWN FAMILY,

  THE BECKETTS APPEALED TO THEIR GOVERNMENT, THEIR APPEAL
WOUND ITS WAY UP TO THE PRESIDENT, WHO, IN TURN, GAVE US ORDERS
TO STRAIGHTEN OUT THE "KATIE BECKETT MATTER,"


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  THE ASSIGNMENT CAME TO OUR DEPARTMENT AND I, BECAUSE OF MY
35 YEARS IN PEDIATRIC SURGERY, WAS THE PERSON WHO PROBABLY BEST
UNDERSTOOD THE MEDICAL ISSUE SIDE AS WELL AS THE HUMAN SIDE OF
THE CASE,  I WAS ASKED TO TAKE ON THE TASK,, *ONE OF THE FIRST OF
MY NEW CAREER AS SURGEON GENERAL,

  UP TO THAT TIME, I HAD SPENT MY PROFESSIONAL LIFE REPAIRING
THE PHYSICAL DISABILITIES OF BABIES AND SMALL CHILDREN, DURING
THAT TIME MY COLLEAGUES AND I HAD BEEN SUCCESSFUL IN GETTING 17

CHILDREN -- 17 "KATIE BECKETTS" -- OUT OF THE HOSPITAL AND BACK
TO THEIR OWN HOMES, EVEN THOUGH VENTILATOR DEPENDENT,


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  FOR EACH OF THOSE CHILDREN, WE HAD ALSO REDUCED THE CHANCES
OF NQSOCOMIAL, OR HOSPITAL-INDUCED, INFECTIONwINCREASED THE
QUOTIENT OF LOVE AND ATTENTION AVAILABLE TO THEM EVERY DAY,,,AHD
BROUGHT DOWN THE COSTS OF THEIR-CARE FROM ABOUT $1,000 A BBy. TO
$400 A WEEK,

  SO I KNEW THE PRESIDENT WAS ON THE RIGHT TRACK AND I SET TO
WORK,

THE RESULTS HAVE BEEN VERY GRATIFYING,

  FIRST, WE WERE ABLE TO SEND KATIE BECKETT HOMEmWITH HER
FAMILY AND WITH FINANCIAL ASSISTANCE FROM THE GOVERNMENT, AT A
FRACTION OF THE COST IN THE HOSPITAL,


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  NEXT, WE SET UP A BOARD OF REVIEW AND BEGAN TO DO THE SAME
THING FOR MANY OTHER FAMILIES LIKE THE BECKETTS,  IN FACT, THE

BOARD BECAME KNOWN AS "THE KATIE BECKETT REVIEW BOARD,"

  THE BOARD HAS SINCE GONE OUT OF BUSINESS BECAUSE BOTH THE
PRESIDENT AND THE CONGRESS CHANGED THE LAW AND THE EXCEPTIONS
HAVE NOW BECOME THE RULE, THE KATIE BECKETTS OF THE UNITED
STATES HAVE WON,

  WE LEARNED MANY THINGS BY THIS EXPERIENCE, BUT -- IN
RETROSPECT -- ONE CLEAR LESSON WE LEARNED WAS THAT THE GOVERNMENT
WAS COMMITTED TO HELP IN CASES LIKE THIS AND IT WOULD SOMEHOW
COME UP WITH THE MONEY TO PAY FOR THAT HELP,


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  THE ONLY QUESTION FOR US WAS WHETHER OR NOT THE GOVERNMENT
WAS SPENDING ITS MONEY IN THE MOST EFFICIENT WAY,  I BELIEVE WE
CAME UP WITH A MUCH BETTER WAY,

  INCIDENTALLY, KATIE IS OFF THE VENTILATOR, WELL, AND LIVING
WITH HER FAMILY,

  THE NEXT ISSUE TO INVOLVE ME WAS THAT OF ORGAN
TRANSPLANTATION, MANY PEOPLE NEED NEW ORGANS,, ,BUT THERE ARE NOT
AS MANY DONORS, a BAND THE TWO ARE HARDLY EVER IN THE SAME PLACE AT
THE SAME TIME,

AGAIN, THIS CAME TO THE ATTENTION OF PRESIDENT REAGAN, WHO

MADE A PUBLIC APPEARANCE OVER THE RADIO TO FIND AN ORGAN FOR AN
ll-MONTH-OLD BOY NAMED JAMIE FISKE, HE HAD A WHITE HOUSE PLANE
STANDING BY TO FLY JAMIE AND/OR A DONOR ORGAN ANYWHERE IN THE
UNITED STATES,

  GRANTED, THAT WAS A VERY INEFFICIENT WAY FOR THE GOVERNMENT
TO PROCEEDwBUT IT DID GET EVERYONE'S ATTENTION,


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  JAMIE FISKE'S PROBLEM WAS MUCH MORE COMPLICATED THAN KATIE
BECKETT'S, KATIE NEEDED A PIECE OF EQUIPMENT, AND EQUIPMENT CAN
BE MANUFACTURED AS NEEDED OR MANUFACTURED AND STORED m IT'S
NEEDED,

BUT THAT'S NOT THE CASE AT ALL WITH MOST HUMAN ORGANS,

JAMIE GOT HIS LIVER AND IS ALIVE AND WELL TODAY,

   I WAS FAMILIAR WITH THIS ISSUE, SINCE I HAD PERFORMED
COUNTLESS PROCEDURES ON CHILDREN WITH BILIARY ATRESIA, WHICH IS
USUALLY THE PEDIATRIC CAUSE FOR LIVER FAILURE AND THE NEED FOR A
TRANSPLANT,

   I CONVENED A "SURGEON GENERAL'S WORKSHOP",. #THIS TIME THE
PARTICIPANTS WERE EXPERTS IN ORGAN TRANSPLANTATION, WE MET IN A
SMALL TOWN OUTSIDE WASHINGTON,

WE PRODUCED GOOD RESULTS,


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  FIRST, WE AGREED THAT THE PRIVATE SECTOR OUGHT TO ASSUME THE
LEADERSHIP IN THIS ISSUE, AND WE CAME AWAY WITH A PLAN OF WHAT
TO DO NEXT, SUBSEQUENTLY, WE FORMED AN "AMERICAN COUNCIL ON
TRANSPLANTATION," A KIND OF UMBRELLA ORGANIZATION FOR ALL GROUPS
-- BOTH PUBLIC AND PRIVATE -- WHO ARE INVOLVED IN THIS ISSUE,

  THE AMERICAN COUNCIL HAS ADDRESSED SUCH QUESTIONS AS THE
AVAILABILITY OF ORGANS, THE MORAL AND ETHICAL ISSUES SURROUNDING
THE QUEUE OF WAITING PATIENTS, THE RESEARCH TO BE ACCOMPLISHED,
THE LEGAL ISSUES TO BE RESOLVED, THE ROLE OF THE MEDIA, AND SO
ON,

UNLIKE THE "KATIE BECKETT" STORY, THIS ONE HAS NO CLEAR,

HAPPY ENDING,


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  ANOTHER CHILD, ASHLEY BAILEY, NEEDED A LIVER, THE FAMILY
JUST DID NOT SEEM TO WANT TO STAND IN THE QUEUE WAITING, SHE TOO
CAME TO THE ATTENTION OF THE PRESIDENT AND WHEN SHE WAS IN
EXTREMIS THE PRESIDENT WENT ON RADIO AND APPEALED FOR A LIVER,

  THE NEXT HE KNEW WAS THE HEADLINES "ASHLEY BAILEY DIES IN
SPITE OF REAGAN APPEAL".  HE WAS VERY DISAPPOINTED, IT REMAINED
FOR ME TO GET A NOTE ON HIS DESK AFTER WHICH HE CALLED ME,  I
COULD TELL HIM HIS APPEAL BROUGHT 40 RESPONSES, BUT NO SURGEON
WOULD PUT ASHLEY AT THE TOP OF THE LIST KNOWING ANOTHER PERSON
PATIENTLY WAITING WOULD DIE AS A RESULT,


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  AND MANY OTHER CHILDREN AND ADULTS AS WELL DIE BEFORE AN
APPROPRIATE ORGAN IS FOUND,

  FOR SOME PROBLEMS MONEY IS NOT THE REAL ISSUE, AND THAT IS
THE CASE HERE, WHILE ORGAN TRANSPLANTATION IS VERY EXPENSIVE, IT
IS ALSO -- MORE IMPORTANTLY -- BEYOND THE CONTROL OF MEDICINE OR
LAW OR ECONOMICS,

  THERE APPEARS TO BE AN IRREDUCIBLE LEVEL OF TRAGEDY IN SOME
AREAS OF MEDICINE AND HEALTH, SOMETHING WE DO NOT LIKE TO
RECOGNIZE IN THESE DAYS OF MIRACULOUS MEDICAL TECHNOLOGY, BUT IT
IS TRUE, AND IN 1984 WE HAD TO FACE THE FACT THAT NOT EVEN THE
PERSONAL INTERVENTION OF THE PRESIDENT OF THE UNITED STATES COULD
PRODUCE A LIVER FOR THE BODY OF A DYING CHILD, AND I THINK THE
ETHICS WERE ON TARGET,


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  THIS YEAR WE EXPECT TO TRANSPLANT ABOUT 1,000 LIVERS WHILE
THE NUMBER OF HEARTS TRANSPLANTED WILL PROBABLY EXCEED 1,300,
AND PREDICTIONS INDICATE THAT WE WILL SURPASS LAST YEAR'S
NUMBERS, AND 9,000 KIDNEYS WILL FIND NEW OWNERS,

  MY NEXT EXAMPLE INVOLVES AN UNKNOWN INFANT WHO, FOR ITS
BRIEF LIFE, HAD BEEN KNOWN ONLY AS "BABY DOE,'

  "BABY DOE' WAS BORN IN APRIL 1982 WITH ESOPHAGEAL ATRESIA,
THE BABY ALSO HAD DOWN SYNDROME,

  A SURGEON AT THE HOSPITAL INFORMED THE PARENTS THAT THE
INFANT HAD A 50-50 CHANCE OF SURVIVING CORRECTIVE SURGERY, I AND
MANY OF MY COLLEAGUES HAD DONE SUCH SURGERY OVER THE YEARS AND WE
KNEW THAT THE ODDS WERE FAR BETTER THAN THAT,  IN THE LAST 8
YEARS OF MY EXPERIENCE, I LOST NO FULL TERM BABY, AND IN
PREMATURES MY SURVIVAL WAS 88% OUR TOTAL EXPERIENCE WHEN I LEFT
PHILADELPHIA IN 1982 WAS 475 INFANTS WITH SOME VARIATION ON THE
USUAL ANOMALY,


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   EVEN TODAY, AFTER MOST OF THE DUST HAS SETTLED, THERE IS NO
COMPLETE AGREEMENT AS TO WHAT REALLY HAPPENED TO BABY DOE, WHAT
IT ALL MEANS, AND WHAT WE SHOULD HAVE DONE NEXT, AND IN THIS
RESPECT, I THINK THE GOVERNMENT ACCURATELY REFLECTS THE FEELING
THAT IS ABROAD IN THE LAND GENERALLY,

   "BABY DOE" WAS BORN IN A COMMUNITY HOSPITAL IN INDIANA, ON
APRIL 8, 1982, WITH MULTIPLE CONGENITAL DEFECTS, INCLUDING AN
ESOPHAGEAL OBSTRUCTION AND DOWN SYNDROME, THE PARENTS AND THE
OBSTETRICIAN DECIDED HE SHOULD DIE,

   BUT MEDICAL OPINION AT THE HOSPITAL WAS DIVIDED, IT'S
IMPORTANT TO REMEMBER THAT FACT, BECAUSE IT HAS BEEN ARGUED THAT
THE POSITION TAKEN BY THE GOVERNMENT AND BY SOME CIVIL RIGHTS
ADVOCATES IN THIS CASE HAS BEEN A POSITION AGAINST THE JUDGMENT
OF PHYSICIANS,  BUT, FROM THE VERY BEGINNING, THERE WAS NO SINGLE,
MEDICAI POSITION,, 'THE "BABY DOE" CASE HAD 2 SIDES TO ALMOST
EVERY QUESTION RAISED,,,


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2 SIDES AS TO WHAT THE TREATMENT OUGHT TO 3E,,,

2 SIDES AS TO m MAKES SUCH DECISIONS,.,

2 SIDES AS TO HOW SUCH DECISIONS ARE MADE, a.

AND 2 SIDES IN REFERENCE TO WHICH- PROCEDURES SHOULD BE
FOLLOWED, WHEN THERE IS 30 CONSENSUS,


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  SOME PHYSICIANS AT THE HOSPITAL DISAGREED WITH THE NEGATIVE
OPINION OF THEIR COLLEAGUES AND THE DECISION OF THE PARENTS, AND
THEY WENT INTO COURT TO SEEK AN INJUNCTION TO PREVENT THE
PARENTS' DECISION FROM BEING CARRIED OUT, INSTEAD, THEY WANTED
THE COURT TO REQUIRE THAT "BABY DOE" BE GIVEN SOME NOURISHMENT
AND SOME MEDICAL CARE, THESE PHYSICIANS USED AS THE BASIS OF
THEIR COMPLAINT AN INDIANA LAW ON CHILD ABUSE AND NEGLECT,

  A CIRCUIT JUDGE HEARD TESIMONY FROM BOTH SIDES -- EVEN HELD
A LONG HEARING IN THE HOSPITAL ITSELF -- AND THEN RULED AGAINST
THE PHYSICIANS, NO INJUNCTION WAS ORDERED AND SO, IN EFFECT, THE
PARENTS WON THAT CASE,

  BUT A SECOND CASE WAS BEGUN IN THE COUNTY PROSECUTOR'S
OFFICE, TECHNICALLY, THIS WAS A PETITION TO THE COURT ENTERED ON
BEHALF OF A CHILD ALLEGED TO BE THE VICTIM OF ABUSE OR NEGLECT,


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  THESE TWO CASES WERE IN THE JUDICIAL STREAM IN INDIANA,
BEING APPEALED UP THE LADDER OF THE COURT SYSTEM, HOWEVER, ON
APRIL 15, SEVEN DAYS AFTER HE HAD BEEN BORN, "BABY DOE" DIED AND
APPEALS IN BOTH CASES WERE MOOTED, HENCE, EXCEPT FOR THAT FIRST
HEARING IN THE COUNTY COURT, THE USTANCL OF THE "BABY DOE"
ISSUE HAS NEVER BEEN THOROUGHLY ADJUDICATEDwIN INDIANA, IN
WASHINGTON, IN CHICAGO, mANYWHERE,

  IT'S IMPORTANT TO REVIE! THIS INFORMATION BECAUSE m
1 IHE.
I)RIGT&iI CASE,  AND FOR THE NEXT SEVERAL MINUTES I WANT TO GO
OVER THEM FOR YOU, FROM MY PERSPECTIVEwAS A SURGEONwAS A
PHYSICIAN, ,,AND AS SURGEON GENERAL,


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FIRST, LET'S LOOK AT THE MEDICAL SIDE OF THIS ISSUE,

  THE INITIAL DIAGNOSIS OF "BABY DOE" BY SOME OF THE MEDICAL
STAFF RAISED SOk L
        It CYEBROWS, WHILE IT IS TRUE THAT SURGERY TO

REPAIR ESOPHAGEAL ATRESIA IN A NEWBORN CAN BE DIFFICULT AND
TRICKY, IT IS ALSO TRUE THAT THE SUCCESS RATE IS VERY HIGH, AS I
HAVE ALREADY INDICATED, I WOULD SAY THAT THE SURGICAL COMMUNITY
HAD SOME LEGITIMATE QUESTIONS ABOUT THE VALIDITY OF THE
OBSTETRICIAN'S COUNSEL TO THE PARENTS OF "BABY DOE,"


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  AND WE HAD TO QUESTION THE PHYSICIAN'S COUNSEL, ALSO, WE
ARE GIVEN TO UNDERSTAND THAT THAT PERSON HAD INDICATED TO THE
PARENTS THAT THE QUALITY OF 'BABY DOE'S' FUTURE LIFE WOULD NOT BE
VERY GOOD, AND THIS, TOO, RAISED SOME EYEBROWS,

   THE FACT IS THAT THERE IS SIMPLY NO WAY THAT A PHYSICIAN CAN
PREDICT WITH JUST WHAT THE 'QUALITY OF LIFE'
WILL BE FOR A CHILD BORN WITH DOWN SYNDROME, THE SCALE OF
RETARDATION CAN PASS FROM MILD TO SEVERE, AND AT EVERY POINT ON
THAT SCALE, THE 'QUALITY OF LIFE' IS AFFECTED BY THE CHILD'S
FAMILY, THE RESPONSE OF THE COMMUNITY, AND THE KIND AND DEGREE OF
MEDICAL AND HEALTH SERVICES THAT ARE AVAILABLE,

   SOME PEOPLE IN THE CHILD'S HOME TOWN AS WELL AS SOME OF US
IN WASHINGTON, THOUGHT THAT MAYBE THE PARENTS HADN'T BEEN GIVEN
TOTALLY ACCURATE, BIAS-FREE, PROFESSIONALLY CONSERVATIVE
INFORMATION ABOUT THE CONDITION OF THEIR NEW BABY BOY'


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  "BABY DOE'S* MEDICAL RECORDS WERE SEALED BY THE COURTS,
NEVERTHELESS, I WAS ASKED TO DO SOME LONG-DISTANCE HYPOTHESIZING
ABOUT "BABY DOE'S" CHANCES, I REFUSED, I BELIEVED THEN -- AND I
GREW TO BELIEVE IT MORE INTENSELY LATER -- THAT THESE KINDS OF
PROBLEMS CAN BE ANSWERED BEST BY RESPONSIBLE PEOPLE WHO ARE RIGHT
THERE ON THE SCENE,

  "BABY DOE" DIED ON APRIL 15, 1982, A WEEK AFTER HIS BIRTH,
HIS DEATH CERTIFICATE INDICATED "MULTIPLE CONGENITAL DEFECTS,"
BUT WHAT DID THAT MEAN?:

o WAS THERE AN IRREPARABLE HEART DEFECT? NEARLY HALF OF ALL
DOWN SYNDROME INFANTS ARE BORN WITH CONGENITAL HEART
DISEASE AND THE MORTALITY RATES FOR SUCH INFANTS ARE VERY
HIGH,


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o WAS THERE IRREVERSIBLE BRAIN DAMAGE?

o OR WERE THE "MULTIPLE DEFECTS" ONLY THE 2 I HAVE ALREADY
DISCUSSED, ,,THAT IS, DOWN SYNDROME AND ESOPHAGEAL ATRESIA?

IN ANY CASE, THE PUBLIC DIDN'T HAVE ANY OF THIS INFORMATION
BETWEEN APRIL 8 AND APRIL 15, 1982, WE DIDN'T HAVE IT THEN-AND
WE STILL DON'T HAVE IT NOW,

  THE MEDICAL PROFESSION WAS DOUBLY FRUSTRATED IN THIS CASE,
FIRST, OF COURSE, THERE WAS THE LACK OF THE MEDICAL DATA, WE
WERE THEORIZI?jG IN THE DARK, WHICH IS REALLY ANATHEMA TO

PHYSICIANS,


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  THE SECOND FRUSTRATION ALSO GOES RIGHT TO THE CORE OF
CONTEMPORARY MEDICAL PRACTICE,, 'FOR BETTER OR FOR WORSE,
DEVELOPMENTS OF THE PAST 20 YEARS HAVE SO GREATLY EXPANDED THE
RANGE OF CURATIVE MEDICINE, THAT PHYSICIANS SIMPLY CANNOT ABIDE
CONFRONTING A CASE THAT CAM BE CURED,

  BUT "BABY DOE" WAS THAT KIND OF CASE, "BAEY DOE" REMINDED
US THAT FOR HIMwAS FOR MANY OF OUR PATIENTS,,,WE HAVE NO
CURES, BUT THE "BABY DOES" OF THIS WORLD NEED SOMETHING ELSE
THAT'S JUST AS VALUABLE AS A MAGICAL MEDICAL CURE, THEY NEED A
LOT OF GENUINE CARF, THEY STILL NEED US IN OUR ROLE AS m,
EVEN THOUGH WE CAN'T DO VERY MUCH FOR THEM IN OUR ROLE AS
PHYSICIANS1

  THAT'S AN IMPORTANT MESSAGE, IT'S ALSO A DEMANDING
MESSAGE,  IT DEMANDS THAT WE LAY ASIDE OUR MEDICAL TEXTS AND,
INSTEAD, SIT DOWN AND WORK THROUGH THOSE QUESTIONS AND ANSWERS
THAT ARE SPUN OUT OF THE DEPTHS OF OUR CONSCIENCE,, aNOT OUT OF
MEDICAL TEXTS,


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  IN MY PEDIATRIC SURGICAL PRACTICE I HAD COME UPON
VARIATIONS OF THIS KIND OF SITUATION BEFORE, OFTENwENOUGH SO
THAT THE EXPERIENCE WAS ENGRAVED IN MY MIND FOREVER:

A TRAGICALLY DISABLED CHILD, maPARENTS WHO ARE CONFUSED,
ANGRY, GRIEVING,,, A DIVIDED MEDICAL STAFF, WHAT THEN?

MY CONSIDERED JUDGMENT -- WORKED OUT OVER SOME YEARS -- TELLS ME
THAT WE HAVE A CLEAR LEGAL AND A CRYSTAL-CLEAR MORAL
RESPONSIBILITY TOWARD THESE PATIENTS AND THEIR FAMILIES:

WE OUGHT TO DO THOSE THINGS THAT WILL GIVE A PERSON ALL THE
LIFE TO WHICH HE OR SHE IS ENTITLED, BUT &QL DO ANYTHING THAT
WOULD VAINLY EXTEND THAT PERSON'S ACT OF DYING,


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  WITH "BABY DOE," ORAL INTAKE WAS IMPOSSIBLE BECAUSE OF THE
ESOPHAGEAL LESION, PARENTERAL ALIMENTATION WOULD NOT SOLVE THE
PROBLEM -- EVEN TEMPORARILY -- BECAUSE PULMONARY ASPIRATION OF
PHARYNGEAL SECRETIONS AND OF GASTRIC JUICE THROUGH THE TRACHEO-
ESOPHAGEAL FISTULA WOULD BE LETHAL, IF ALL WE KNEW ABOUT THE
CASE WAS WHAT THE PRESS REPORTED, THEN I WOULD HAVE TO SAY THAT
'BABY DOE' -- AT THE VERY LEAST -- DESERVED SURGERY FOR THE
LESION, IT COULD HAVE BEEN A LIFE-SUSTAINING PROCEDURE AND WOULD
NOT HAVE MERELY PROLONGED THE ACT OF DYING, BUT AGAIN, I HAVE TO
SAY THAT WE DID NOT HAVE THE COMPLETE MEDICAL RECORD,

  BUT 'BABY DOE" DOES NOT FIT NEATLY INTO ANY OF THE LEGAL OR
MEDICAL OR ETHICAL PIGEONHOLES WE HAVE ALL SO CAREFULLY
CONSTRUCTED FOR OURSELVES OVER TIME, THIS WAS NOT A
STRAIGHTFORWARD CASE OF CHILD ABUSE AND NEGLECT, IN WHICH A
NORMAL, HEALTHY CHILD HAD BECOME THE VICTIM OF PARENTAL VIOLENCE,


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  NO ONE DID ANYTHING "VIOLENT" TO "BABY DOE," TRUEwNO ONE
MOVED TO HELP HIM, BUT NO ONE LIFTED A FINGER MNST HIM
EITHER, HE WASN'T DRIVEN OUT OF THE HOUSE INTO THE COLD, BLACK
NIGHT, BUT NEITHER WAS HE THE NORMAL, HEALTHY CHILD THAT PEOPLE
EASILY SEE IN THEIR MIND'S EYE,

  THE KEY TO THIS CASE, THEN, WAS THE CHILD'S HANDICAPPED
CONDITION, THIS IS WHAT MADE IT NEWSWORTHYmWHAT MADE THE
CIRCUMSTANCES PARTICULARLY TROUBLING,,,AND WHAT STIMULATED A
NUMBER OF PEOPLE IN INDIANA, ELSEWHERE IN THE COUNTRY, AND IN
WASHINGTON TO THINK ABOUT "BABY DOE" AS A VICTIM OF
DISCRIMINATION, INSTEAD OF -- OR IN ADDITION TO -- BEING A VICTIM
OF ABUSE AND NEGLECT,

  EVEN BEFORE "BABY DOE'S" SHORT, ONE-WEEK LIFETIME HAD ENDED,
MANY PEOPLE WERE BEGINNING TO ASK IF THE CARE BEING GIVEN "BABY
DOE" WAS THE KIND OF CARE ANY BABY WITH ESOPHAGEAL ATRESIA WOULD
RECEIVE? THE CANDID OPINION WASd'PROBABLY NOT/'


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  THE ASSOCIATED DOWN SYNDROME WAS, THEREFORE, EXTREMELY
SIGNIFICANT,  IF "BABY DOE" HAD MLY HAD DOWN SYNDROME, HE WOULD
HAVE BEEN NOURISHED AND CARED FOR,  IF HE HAD ONLY HAD ESOPHAGEAL
ATRESIA, HE WOULD HAVE BEEN OPERATED ON AND CURED, YOU DON'T

HAVE TO BE POSITIVE ABOUT ANY OF THIS, OF COURSE, LAW AND ETHICS
ONLY REQUIRE THAT THERE BE A REASONABLE SUSPICION THAT SUCH IS
THE CASE, AND THERE WAS,

  HENCE, THE "BABY DOE" ARGUMENT BEGAN TO CENTER AROUND WHAT
WE CALL IN THE UNITED STATES, SECTION 504 OF THE REHABILITATION
ACT OF 1973, OR PUBLIC LAW 93-112, THAT SECTION SAYS THAT "NO
OTHERWISE QUALIFIED HANDICAPPED INDIVIDUALwSHALL, SOLELY BY
REASON OF HIS HANDICAP, BE EXCLUDED FROM THE PARTICIPATION IN, BE
DENIED THE BENEFITS OF, OR BE SUBJECTED TO DISCRIMINATION UNDER
ANY PROGRAM OR ACTIVITY RECEIVING FEDERAL FINANCIAL ASSISTANCE?


31

  THIS IS ALMOST IDENTICAL TO THE LANGUAGE OF TITLE VI OF THE
CIVIL RIGHTS ACT OF 1964 AND OF TITLE IX OF THE EDUCATION
AMENDMENTS OF 1972, THOSE TWO LAWS FORBID ANYONE USING FEDERAL
FUNDS FROM DENYING BENEFITS OR SERVICES TO A BLACK PERSON BECAUSF
HE OR SHE IS BLACKwOR A HISPANIC PERSONwOR AN ASIANwOR AN
ELDERLY PERSON,, 'OR A WOMAN,

  LIKE MOST MAJOR HOSPITALS IN THE COUNTRY, THE HOSPITAL WHERE
THIS CHILD WAS BORN DID AND DOES RECEIVE FEDERAL ASSISTANCE AND,
THEREFORE, MUST CONDUCT ITS AFFAIRS ACCORDING TO A NUMBER OF
FEDERAL LAWS, INCLUDING THOSE I MENTIONED,

  BUT WE WERE ALL AWARE OF A LARGER, UNDERLYING QUESTION OF
LAW THAT CAME UP EARLY IN THE HISTORY OF "BABY DOE," BRIEFLY
STATED, IT IS THIS: DOES THE STATE HAVE ANY BUSINESS AT Au, TO
STEP INTO A MATTER AFFECTING A NEWBORN CHILD AND GO OVER THE
HEADS, SO TO SPEAK, OF THE PARENTS?


32

  WHEN THE "BABY DOE" CASE FIRST HIT THE NEWSPAPERS, A NUMBER
OF PEOPLE SAID THE GOVERNMENT "HAD NO RIGHT" TO INTERFERE IN A
MATTER THAT WAS THE RESPONSIBILITY ONLY OF THE PARENTS AND OF THE
ATTENDING PHYSICIANS, SOMEHOW, OUR NATIONAL EXPERIENCE WITH

TRUANCY LAWS AND CHILD ABUSE LAWS AND IMMUNIZATION LAWS WAS
IRRELEVANT, AND ANYWAY, THOSE LAWS PROTECT CHILDREN WHO ARE NO
LONGER INFANTS,

  BUT I WOULD RESPOND BY NOTING THAT THERE IS NO
CONSTITUTIONAL DEFINITION OF HO# OLD SOMEONE HAS TO BE IN ORDER
TO RECEIVE THE PROTECTION OF THE STATE, THERE IS NO MINIMUM-AGE
REQUIREMENT FOR NATIVE-BORN CITIZENSHIP, FOR EXAMPLE, AN
AMERICAN-BORN CHILD DOES NOT HAVE TO REMAIN IN THE UNITED STATES
FOR A MONTH, ,,OR TWO WEEKS, ,,OR EVEN FOR ONE HOUR IN ORDER TO
QUALIFY FOR A SOCIAL SECURITY NUMBER AND A PASSPORT, THE CHILD
MERELY HAS TO BE "BORN" AS AN AMERICAN, HE/SHE CAN EVEN BE
PRESIDENT,


33

  THE REGULATIONS REGARDING "BABY DOE" WRITTEN BY OUR
DEPARTMENT WERE CHALLENGED IN COURT AND STRUCK DOWN, I TRIED
AGAIN AND THIS TIME WE SUCCEEDED WITH A FINAL RULE THAT WAS
PROTECTIVE OF CHILDREN,,,CONDUCIVE TO BETTER PATIENT CARE-AND
NOT BURDENSOME TO THOSE WHO CARE FOR NEWBORNS,

  MEANWHILE, THE US, CONGRESS TOOK THIS NEW VERSION AND, IN
1985, WROTE NEW LEGISLATION BASED UPON IT, THE CONGRESS CALLED
THE "BABY DOE" SITUATION A CASE OF "MEDICAL NEGLECT," IT
REQUIRED NEW PROCEDURES IN HOSPITALS TO IDENTIFY AND PREVENT SUCH
"MEDICAL NEGLECT" FROM OCCURRING,


34

  THE LAW WENT INTO EFFECT THREE YEARS TO THE DAY AFTER "BABY
DOE" DIED, A RECENT TELEPHONE SURVEY OF HOSPITALS IN ALL 50
STATES SEEMED TO INDICATE THAT THE LAW WAS BEING OBSERVED AND THE
LIVES OF MANY CHILDREN HAVE BEEN SAVED,

  THE "BABY DOE" EXPERIENCE WAS A HARD LESSON FOR ME, IT
TAUGHT ME ONCE AGAIN THAT CONTEMPORARY SOCIETY, WITH ALL ITS
TECHNOLOGY AND SOPHISTICATION, IS STILL SLOWLY WORKING OUT ITS
RESPONSES TO THE MOST BASIC QUESTIONS OF ETHICS AND MORALITY,

  HENCE, IF YOU ARE COMMITTED TO SAVING LIVES THAT ARE PUT AT
RISK BECAUSE OF ETHICAL CONFLICTS, YOU HAVE TO BE PREPARED TO
NEGOTIATE HARD AND FIGHT HARD FOR EACH LIFE,


35

  AND THAT BATTLE IS VERY DIFFICULT, BECAUSE YOUR ADVERSARIES
ARE NOT MONSTERS,, ,THEY ARE JUST AS HUMAN AS YOU ARE,

  I SOMETIMES THINK THAT, IF-THE "BABY DOES" OF THIS WORLD
WERE 25 YEARS OLD, THEY WOULD HAVE A NATIONAL ADVOCACY
ORGANIZATION AND A STRONG CONGRESSIONAL LOBBY AND MOST OF OUR
DISCUSSION TODAY WOULD 3E QUITE ACADEMIC, BUT UNFORTUNATELY,
THESE BABIES ARE TOO SMALL, TOO WEAK, AND TOO POOR,

  THESE EXPERIENCES, AS IMPORTANT AS THEY WERE, SEEM IN
RETROSPECT TO HAVE BEEN A KIND OF TRAINING FOR THE ISSUE THAT
OCCUPIES VIRTUALLY ALL MY WAKING HOURS THESE DAYS,

  IT IS THE ISSUE OF AIDS, AND, AGAIN, CHILDREN ARE FOR ME AT
THE HEART OF IT,


36

  VIRTUALLY ALL OUR ATTENTION IN THE MATTER OF AIDS HAS BEEN
FOCUSED ON THE TWO MAJOR GROUPS OF AIDS VICTIMS: HOMOSEXUALS AND
BISEXUAL MALES, WHO COMPRISE TWO-THIRDS OF ALL AIDS CASES, AND
DRUG ADDICTS WHO USE CONTAMINATED NEEDLES, WHO COMPRISE A FOURTH
OF ALL AIDS VKTIMS,

  THE TOTAL NUM3ER OF AIDS CASES IN OUR COUNTRY SO FAR HAS NOW
SURPASSED 42,000, OF THAT FJUPIER, ALMOST 600 HAVE BEEN CHILDREN
UNDER THE AGE OF 13, THE GREAT MAJORITY OF THEM HAD THE DISEASE
AT BIRTH, BUT A HUNDRED OR SO ARE EITHER HEMOPHILIACS OR RECEIVED
THE VIRUS IN TRANSFUSED BLOOD OR BLOOD PRODUCTS SOMETIME BEFORE
1985,

  BY 1991 WE ESTIMATE THAT AS MANY AS 3,000 CHILDREN WILL HAVE
HAD AIDS,


37

WHAT IS HAPPE:i!NG TO THESE CHILDREN?

  THE MOST CELEBRATED CASE IS THAT OF THE THREE RAY BOYS IN
ARCADIA, FLORIDA, THEY WERE EXCLUDED FROM THE LOCAL ELEMENTARY

SCHOOL THERE AND, BRIEFLY, IN NEIGHBORING ALABAMA AS WELL,

  THE DISCRIMINATION HAS ALSO SPREAD TO THEIR SISTER, WHO WAS
INITIALLY EXCLUDED FROM SCHOOL AS WELL, AND TO THEIR FATHER, WHO
HAS HAD TO LEAVE HIS JOB,

  THE LOCAL BARBER WOULD NOT CUT THEIR HAIR, THEIR CHURCH AND
ITS PRIEST ASKED THAT THE RAY FAMILY NO LONGER ATTEND,

THERE ARE MANY INSTANCES OF OTHER HEMOPHILIAC CHILDREN WHO

ARE RECEIVED BY THEIR NEIGHBORS WITH THE SAME KIND OF FEAR AMD
HATE AS LEPERS WERE IN THE MIDDLE AGES,


38

  A WORSE SITUATION IN MANY PUBLIC HEALTH RESPECTS EXISTS
AMONG THE CHILDREN BORN WITH AIDS,

  THEY ARE BORN TO DRUG ABUSING WOMEN OR TO THE SEXUAL
PARTNERS OF DRUG ABUSING MEN, 81% ARE BLACK; ALMOST ALL THE REST
ARE HISPANIC,

  MOST OF THEM ARE ABANDONED BY THEIR MOTHERS,, #LEFT TO LIVE
OR DIE IN THE HOSPITAL NURSERYwATTENDED BY PEDIATRIC NURSES WHO
NEVER IMAGINED THAT SUCH TRAGEDY WOULD BE THE DAILY STUFF OF
THEIR PROFESSIONAL LIVES,

  MOST OF THE INFANTS GROW OLD ENOUGH AND ARE ASYMPTOMATIC
ENOUGH TO BE MOVED OUT OF THE HOSPITAL AND PLACED IN FOSTER
HOMES,


39

  BUT THAT ISN'T EASY BECAUSE THE STIGMA OF THE DIAGNOSIS AND
THE METHOLOGY OF THE TRANSMISSION OF THE DISEASE ARE WIDELY HELD
BY THOSE USUALLY AVAILABLE TO PROVIDE FOSTER CARE,

IN NEW YORK CITY, WHICH HAS THE LARGEST NUMBER OF HOMELESS

OLDER CHILDREN WITH AIDS, A COMPLEX SYSTEM OF TOTAL
CONFIDENTIALITY IS MAINTAINED, SO THAT WHEN AN AIDS CHILD APPEARS
IN SCHOOL, NEITHER THE PRINCIPAL, NOR THE TEACHERS, NOR THE
STUDENTS, NOR ANYONE ELSE IN THE SCHOOL OR THE NEIGHBORHOOD
KNOWS IF HE OR SHE IS AN AIDS CHILD OR NOT,

  WE'VE GOTTEN THIS FAR, BUT WE'RE NOT SURE WHAT LIES AHEAD
FOR THESE CHILDRENwOR FOR THE SOCIETY THAT SUPPORTS THEM,
CLEARLY THEY ARE MORE THAN JUST "WARDS OF THE STATE," NEW YORK
CITY CAN TRY TO MAKE THEIR LIVES AS NORMAL AS POSSIBLE, YET THESE
CHILDREN CANNOT ENGAGE IN ANY ACTIVITIES -- APPROVED OR

UNAPPROVED -- IN WHICH THEIR BLOOD MAY MIX WITH ANOTHER'S,


40

  WHAT HAPPENS WHEN THEY ENTER AND PASS THROUGH PUBERTY? IT'S
NOT TOO MANY YEARS AWAY, WE KNO'd THAT THE AIDS VIRUS CAN
INCUBATE THAT LONG AND WE WON'T HAVE A VACCINE BY THEN,

SO WHAT KIND OF "WARD OF THE STATE" DOES SUCH A CHILD

BECOME?

  WE REJECT QUARANTINE FOR PEOPLE
SOLUTION OF ANY SORT, RATHER, IT IS
PROBLEM THAN THE DISEASE ITSELF,

YET, THESE CHILDREN ARE ALREADY

WITH AIDS, IT IS NOT A
ANOTHER AND EVEN LARGER

LIVING LIVES OF SEPARATENESS

I

TO A GREAT DEGREE, HOW MUCH MORE CAN THEY -- AND CAN SOCIETY --

ENDURE?

  I WAS ABLE TO BRING MY OTHER LITTLE STORIES TO SOME KIND OF
CLOSE, BUT THIS ONE IS STILL AN OPEN BOOK,


41

  AFTER ALL THE OTHER ISSUES SURROUiDING AIDS ARE THRASHED OUT
AND WE EACH RETURN TO OUR APPOINTED TASKS, THE SHADOW OF THESE
CHILDREN GRO\JS LONGER ON THE WALL BEHIND US,

  THIS IS NOT A UNIQUE, "AMERICAN" PROBLEM, BUT, IN OUR
UNIQUELY AMERICAN WAY, WE ARE PERHAPS THE FIRST TO TALK OPENLY
ABOUT IT, AriD WE MUST,,,WE ,m MUSTmBECAUSE THESE CHILDREN
WITH AIDS WILL SOON BE IN EVERY COUNTRY ASKING FOR THE THING THAT
ALL CHILDREN WANT: A FUTURE,

  AND, FOR THE FIRST TIME, I AM FORCED TO ADMIT TO THESE
CHILDREN THAT,,,1 DON'T BELIEVE THERE IS ONE,

THANK YOU,