ORIGINAL

ADDRESS

BY

C, EVERETT KOOP, MA
   SURGEON GENERAL
U,S, PUBLIC HEALTH SERVICE

         AND

DEPUTY ASSISTANT SECRETARY FOR HEALTH
U,S, DEPARTMENT OF HEALTH AND HUMAN SERVICES

PRESENTED TO THE NATIONAL DOWN'S SYNDROME CONGRESS
        SAN ANTONIO, TEXAS
         OCTOBER 27, 1984


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(GREETINGS TO HOSTS, GUESTS, FRIENDS, ETCJ

  I'M PLEASED TO BE HERE THIS MORNING TO TAKE PART IN THE NATIONAL
DOWN'S SYNDROME CONGRESS AND CONTRIBUTE WHAT I CAN TO THESE PROCEED-
INGS, AND IT IS A SPECIAL PLEASURE TO SHARE THIS PLATFORM WITH THE
ASSISTANT SECRETARY OF EDUCATION, THE HONORABLE MADELEINE WILL,

  I WILL SOON COMPLETE THE THIRD OF MY FOUR-YEAR TERM IN WASHINGTON
AS SURGEON GENERAL, IN THAT TIME I HAVE GATHERED CERTAIN IMPRESSIONS
ABOUT OUR CAPITAL CITY THAT WILL STAY WITH ME THE REST OF MY LIFE,
AND AMONG THEM ARE THE NAMES AND FACES OF THE FEW PEOPLE IN WASHINGTON
WHO ARE NOT LAWYERS, ACCOUNTANTS, PROGRAM ANALYSTS, POLICY CONSULT-
ANTS, LOBBYISTS, OR CONTRACTORS,

  I THINK I'LL ALWAYS REMEMBER THE FEW PEOPLE WHO RISE ABOVE SUCH A
CROWD,,,WHO ARE IN WASHINGTON NOT FOR THE PERSONAL MONETARY GAIN
THAT'S AVAILABLE BUT FOR THE OPPORTUNITY THAT'S AVAILABLE FOR HELPING
THOSE OF OUR CITIZENS WHO NEED IT MOST: THE ELDERLY, THE DISADVAN-
TAGED, THE POOR, THE HANDICAPPED, AND CHILDREN,


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   AMONG THOSE FEW -- AND IN THE VERY FRONT RANK -- WOULD BE MY
FRIEND AND COLLEAGUE, ASSISTANT SECRETARY WILL, I KNOW A LITTLE BIT
ABOUT THE JOB SHE HAS TO DO, ,,AND THE JOB SHE HAS DONE, AND I URGE
YOU ALL TO GIVE HER ALL THE ENCOURAGEMENT AND SUPPORT THAT YOU CAN,

  MRS, WILL EXERCISES STRONG PERSONAL AND MORAL FORCE IN BEHALF OF
FEDERAL PROGRAMS DESIGNED TO HELP DISABLED, DISADVANTAGED, AND
DEFENSELESS PEOPLEmYOUNG PEOPLE AND CHILDREN IN PARTICULAR,,,WHO
CANNOT ALWAYS HELP THEMSELVES, HERS IS A BIG JOB, BUT NOW AND THEN IT
FALLS IN DANGER OF BEING OVERWHELMED BY SOME OF THE LESS ATTRACTIVE
ELEMENTS IN THE WASHINGTON ENVIRONMENT, THAT'S WHEN MRS, WILL AND A
FEW OTHERS OTHERS LIKE HER NEED THE SUPPORT OF GOOD PEOPLE FROM AROUND
THE COUNTRY, PEOPLE SUCH AS YOU HERE TODAY,

  ALTHOUGH WE ARE OFTEN ON THE SAME SIDE IN THE SAME BATTLES,
ASSISTANT SECRETARY WILL AND I DON'T OFTEN SHARE THE SAME PUBLIC
PLATFORM, AS THIS MORNING, THEREFORE, I HOPE WITH YOUR INDULGENCE, I
HAVE SEIZED THIS OPPORTUNITY TO SHOW MY DEEP REGARD FOR WHO SHE IS AND

WHAT SHE DOES,


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  HAVING SAID THAT, I MUST ALSO CONFESS THAT I WAS MIGHTILY TORN
OVER YOUR KIND INVITATION, IT PRESENTED A CONFLICT WITH ANOTHER EVENT
OF SOME CONSEQUENCE, EVEN THOUGH IT'S A VERY LOCAL AND PRIVATE EVENT,

  RIGHT NOW, AS I AM ADDRESSING YOU, A YOUNG MAN NAMED JOSHUA
ANDREW ROSENBLUM IS CELEBRATING HIS BAR MITZVAH IN EVANSTON, ILLINOIS,
HIS FATHER, VICTOR ROSENBLUM, IS A WIDELY RESPECTED PROFESSOR OF
CONSTITUTIONAL LAW AT NORTHWESTERN UNIVERSITY, AND I MUST SAY I WAS
GREATLY TEMPTED TO JOIN VICTOR AND LOUIS AND THEIR 12 OTHER CHILDREN
IN THE PEWS OF THE BETH EMET SYNAGOGUE THIS MORNING TO CELEBRATE THE
"COMING OF AGE" OF THEIR 13TH CHILD, JOSHUA,

  JOSHUA, AS YOU MIGHT HAVE GUESSED, IS A DOWN'S SYNDROME CHILD,
THAT IS NOT AN INCIDENTAL BIT OF INFORMATION, OF COURSE, IT'S
IMPORTANTwBUT IT'S NOT THE KEY PIECE OF INFORMATION ABOUT HIM AND
HIS FAMILY, THE REALLY IMPORTANT THING TO KNOW ABOUT JOSHUA IS THAT
HE AND HIS EXTRAORDINARY FAMILY SHARE STRONG BONDS OF LOVE, OF TRUE
CLOSENESS, OF MUTUAL SUPPORT -- YES, HE SUPPORTS THEM AS THEY HAVE
SUPPORTED HIM -- AND THEY SHARE STRONG TIES OF RELIGION AND CULTURE,


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  TODAY, JOSHUA, WHO MIGHT BE CONSIDERED A "HANDICAPPED" CHILD,
WILL TAKE HIS RIGHTFUL PLACE -- A PLACE HE HAS EARNED, ACCORDING TO

TRADITIONAL TESTS -- IN A JEWISH LINE OF HISTORY THAT REACHES BACK
NEARLY 6,000 YEARS, AND HE WILL TAKE PART IN THE RELIGIOUS SERVICE IN
A SANCTUARY FILLED WITH HIS PARENTS AND SIBLINGS AND FRIENDS,

  AND I HAVE TO ASK, "HOW MANY PEOPLE IN OUR SOCIETY, a *WHOM WE SAY
WERE BORN NORMAL, ,,HOW MANY OF THEM ARE TRULY HANDICAPPED BY THE
ABSENCE OF LOVE AND A SENSE OF 'PLACE,' TWO THINGS THAT JOSHUA

HAS IN ABUNDANCE,"  THE ANSWER, I
"HUNDREDS OF THOUSANDS,"

  AND, TO ME, THAT IS THE HEART
THAT CHILDREN WITH DOWN'S SYNDROME
TIME IN LIFE AND MAY NOT ABSORB AS
REST OF US,  BUT WE ALSO KNOW THAT
LIFE THEY CAN ABSORB,

AM SAD TO SAY, IS PROBABLY

OF WHY WE'RE HERE TODAY,  WE KNOW
ARE GOING TO HAVE A MORE DIFFICULT
MUCH FROM THE EXPERIENCE AS THE
THEY HAVE A RIGHT TO EVERY BIT OF


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  AND WE ALSO KNOW THAT THE QUALITY OF THEIR LIVES MAY BE EVERY BIT
AS SWEET AND RICH AS THE LIVES OF THEIR MORE NORMAL SIBLINGS AND
FRIENDS, JOSHUA ROSENBLUM AND MANY THOUSANDS OF OTHER DOWN'S SYNDROME
CHILDREN HAVE TAUGHT US THAT, IT IS IN OUR POWER TO HELP EACH OF
THESE CHILDREN ACHIEVE THAT KIND OF LIFE-AND WE ARE HERE TODAY AS
TESTIMONY OF OUR PROMISE THAT WE WILL DO JUST THAT,

  AS YOU CAN PROBABLY DETECT, I DON'T COME TO THIS SUBJECT OF
DISABLED OR HANDICAPPED CHILDREN WITH ANY DETACHMENT, AS YOU KNOW, I
SPENT MY ENTIRE PROFESSIONAL LIFE AS A PEDIATRIC SURGEON SERVING THE
NEEDS OF SUCH CHILDREN AND THEIR FAMILIES, HENCE, IT HAS BEEN
DIFFICULT FOR ME OVER THE PAST 30 MONTHS TO MAINTAIN A CERTAIN
CLINICAL DETACHMENT WHILE WRESTLING WITH THE ISSUES WRAPPED UP IN THE
SHORT, TRAGIC HISTORY OF THE CHILD KNOWN AS "BABY DOE,"


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  HOWEVER, FOR THE NEXT SEVERAL MINUTES I'M GOING TO TRY TO CONVEY
WHAT SOME OF US IN GOVERNMENT HAVE BEEN WORRYING ABOUT, EVER SINCE
THAT DAY IN APRIL 1982, WHEN "BABY DOE" DIED,

   I AM CAREFUL TO SAY "SOME OF US IN THE GOVERNMENT" BECAUSE --

EVEN TODAY, AFTER MOST OF THE DUST HAS SETTLED -- THERE IS NO COMPLETE

AGREEMENT AS TO WHAT REALLY HAPPENED, WHAT IT ALL MEANS, AND WHAT WE
HAVE TO DO NEXT, AND IN THIS RESPECT, I'M AFRAID THE GOVERNMENT
ACCURATELY REFLECTS THE PROBLEM THAT IS ABROAD IN THE LAND GENERALLY,

   YOU WILL RECALL THAT "BABY DOE," OR "THE BLOOMINGTON BABY," AS
THE LITTLE BOY WAS FIRST KNOWN, WAS BORN IN BLOOMINGTON HOSPITAL,

INDIANA, ON APRIL 8, 1982, HE REPORTEDLY HAD MULTIPLE CONGENITAL
DEFECTS, INCLUDING AN ESOPHAGEAL OBSTRUCTION AND DOWN'S SYNDROME, AN
ATTENDING SURGEON SAID THE OPERATIVE MORTALITY FOR CLEARING UP THE
OBSTRUCTION WAS ABOUT 50 PERCENT, AN ATTENDING PHYSICIAN SAID THE
INFANT WOULD GROW UP SEVERELY RETARDED,


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  ON THE BASIS OF THIS INFORMATION, THE PARENTS OF "BABY DOE"
DECIDED THAT NO FURTHER MEDICAL ASSISTANCE OR NOURISHMENT BE GIVEN TO
THEIR CHILD,

  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
THERE WAS NO SINGLE MEDICAL POSITION, FROM EVERYTHING WE NOW KNOW,
HAD THERE BEEN A FORUM OF SOME KIND FOR DISCUSSION AMONG THE
HOSPITAL'S PHYSICIANS, A MAJORITY MIGHT WELL HAVE OPPOSED THE PARENTS'
DECISION,

  FROM THE VERY BEGINNING, THE "BABY DOE" CASE HAD 2 SIDES TO
ALMOST EVERY QUESTION THAT WAS RAISED, a,


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2 SIDES AS TO WHAT THE TREATMENT OUGHT TO BE,,,

2 SIDES AS TO WHO MAKES SUCH DECISIONS,,,

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

AND 2 SIDES IN REFERENCE TO WHICH PROCEDURES SHOULD BE FOLLOWED
  WHEN THERE IS NO CONSENSUS,

  SOME OF THE PHYSICIANS AT BLOOMINGTON HOSPITAL, WHO DISAGREED
WITH THE NEGATIVE OPINION OF THEIR COLLEAGUES AND THE DECISION OF THE
PARENTS, WENT INTO COURT TO SEEK AN INJUNCTION PREVENTING THE PARENTS'
DECISION FROM BEING CARRIED OUT AND, INSTEAD, REQUIRING THAT "BABY
DOE" BE GIVEN SOME NOURISHMENT AND SOME MEDICAL CARE, THEIR AUTHORITY
WAS THE INDIANA LAW ON CHILD ABUSE AND NEGLECT,


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  JUDGE JOHN BAKER, A CIRCUIT JUDGE SERVING MONROE COUNTY, HEARD

TESTIMONY FROM BOTH SIDES -- EVEN HELD A LONG HEARING IN THE HOSPITAL

ITSELF -- AND THEN RULED THAT NO INJUNCTION WAS NECESSARY, IN EFFECT,
THE PARENTS WON THAT DECISION,

  A SECOND CASE WAS BEGUN WHEN THE COUNTY PROSECUTOR'S OFFICE
ENTERED WHAT IS KNOWN IN INDIANA AS A "CHINS" PETITION, THAT IS, A
PETITION FOR A "CHILD IN NEED OF SERVICE," SUCH A PETITION IS USED ON
BEHALF OF CHILDREN ALLEGED TO BE THE VICTIMS OF ABUSE OR NEGLECT,

   THESE TWO CASES WERE IN THE JUDICIAL STREAM IN INDIANA, THE
FIRST CASE, HEARD BY JUDGE BAKER, WAS APPEALED TO THE INDIANA SUPREME

COURT, THAT COURT SAID THAT JUDGE BAKER HAD ACTED APPROPRIATELY AND
HAD NOT EXCEEDED HIS AUTHORITY, THE INDIANA SUPREME COURT, HOWEVER,
DID NOT REVIEW THE SUBSTANCE OF JUDGE BAKER'S DECISION, THE

PLAINTIFFS -- PHYSICIANS OF BLOOMINGTON HOSPITAL -- APPEALED NEXT TO

THE UNITED STATES SUPREME COURT,


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  ON APRIL 15, SEVEN DAYS AFTER HE HAD BEEN BORN, "BABY DOE" DIED,
IN A MATTER OF HOURS, MR, JUSTICE JOHN PAUL STEVENS WAS TO HAVE HEARD
A REQUEST THAT THE INDIANA SUPREME COURT DECISION BE OVER-RULED, BUT
WITH THE BABY'S DEATH, THE REQUEST WAS MOOTED, THE SECOND CASE HAD
THE SAME FATE, IT ALSO WAS MOOTED AT THE INDIANA APPELLATE LEVEL,

  HENCE, EXCEPT FOR THAT FIRST TIME AROUND IN JUDGE BAKER'S COURT,
THE SUBSTANCE OF THE "BABY DOE" ISSUE HAS NEVER BEEN THOROUGHLY
ADJUDICATEDmIN INDIANA, IN WASHINGTON, IN NEW YORK-ANYWHERE,

  IT'S IMPORTANT TO REVIEW THIS INFORMATION BECAUSE ALL THE
ELEMENTS OF THE "BABY DOE" CONTROVERSY OVER THE PAST 2 AND A HALF
YEARS WERE RIGHT THERE IN THE ORIGINAL CASE, AND FOR THE NEXT SEVERAL
MINUTES I WANT TO GO OVER THEM FOR YOU, FROM MY PERSPECTIVE, ,,AS A
SURGEON,, ,AS A PHYSICIAN, ,,AND AS SURGEON GENERAL,

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


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  THE INITIAL DIAGNOSIS OF "BABY DOE" BY SOME OF THE BLOOMINGTON
MEDICAL STAFF RAISED SOME EYEBROWS, 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,  IN THE LAST 7 YEARS
OF MY EXPERIENCE, EVEN PREMATURE BABIES WITHOUT ADDITIONAL ANOMALIES
HAD A SURVIVAL RATE OF 88 PERCENT, SO THE SURGICAL COMMUNITY HAD SOME
LEGITIMATE QUESTIONS TO ASK CONCERNING THE ADVICE THE SURGEON GAVE TO
THE PARENTS OF "BABY DOE,'

  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, THIS
ALSO RAISED SOME EYEBROWS, THERE IS SIMPLY NO WAY THAT A PHYSICIAN
CAN PREDICT WITH ANY ACCURACY AT ALL JUST WHAT THE 'QUALITY OF LIFE'
WILL BE FOR A CHILD BORN WITH DOWN SYNDROME,


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  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,  I WOULD ONLY WISH,
FOR EXAMPLE, THAT THE PHYSICIAN WHO ADVISED "BABY DOE'S" PARENTS MIGHT
HAVE THE PRIVILEGE OF ATTENDING JOSHUA ROSENBLUM'S BAR MITZVAH THIS
MORNING,

  SO THERE WERE SERIOUS QUESTIONS CONCERNING THE MEDICAL COUNSEL
RECEIVED BY THE PARENTS OF "BABY DOE," SOME PEOPLE IN BLOOMINGTON, AS
WELL AS SOME OF US 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,

  BUT SECOND, I THINK THE POINT MUST BE MADE -- AND EMPHASIZED --
THAT THOSE OF US IN WASHINGTON WHO WERE ASKED TO BECOME INVOLVED WERE
RELUCTANT TO DO SO,


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  SINCE THE MEDICAL RECORDS WERE SEALED BY THE COURTS, WE DID NOT
HAVE AVAILABLE TO US ALL THE PERTINENT INFORMATION, I WAS ASKED TO DO
SOME LONG-DISTANCE HYPOTHESIZING ABOUT "BABY DOE'S" CHANCES, BUT I
REFUSED, I BELIEVED THEN -- AND I GREW TO BELIEVE IT MORE INTENSELY
LATER -- THAT THESE KINDS OF PROBLEMS CAN BE ANSWERED BEST BY CLEAR-
THINKING, RESPONSIBLE PEOPLE WHO ARE RIGHT THERE ON THE SCENE,

  AS IT TURNED OUT, WHEN "BABY DOE" DIED ON APRIL 15, 1982, A WEEK
AFTER BIRTH, THE DEATH CERTIFICATE INDICATED "MULTIPLE CONGENITAL
DEFECTS,"  BUT WHAT DID THIS MEAN?:

* WAS THERE IRREPARABLE HEART DAMAGE? NEARLY HALF OF ALL DOWN'S
SYNDROME INFANTS ARE BORN WITH CONGENITAL HEART DISEASE AND THE
MORTALITY RATES FOR SUCH INFANTS ARE VERY HIGH,

* WAS THERE IRREVERSIBLE BRAIN DAMAGE?


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* 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 THENwAND WE STILL
DON'T HAVE IT NOW,

  "BABY DOE" REMINDED US THAT FOR HIMwAS FOR MANY OF OUR
PATIENTS,, ,WE HAVE NO CURES, BUT WE CAN OFFER SOMETHING ELSE JUST AS
VALUABLE, WE CAN OFFER SUCH PATIENTS A LOT OF GENUINE CARE, THEY MAY
STILL NEED US AS PEOPLE, EVEN THOUGH WE CAN'T DO VERY MUCH FOR THEM AS
PHYSICIANS,

  THAT'S AN IMPORTANT MESSAGE, BUT IT'S 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,, ,NOT OUT OF MEDICAL TEXTS AND JOURNALS,


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   MY CONSIDERED JUDGMENT -- WORKED OUT OVER SOME YEARS -- TELLS ME
THAT WE OUGHT TO DO THOSE THINGS THAT GIVE A PERSON ALL THE LIFE TO
WHICH HE OR SHE IN ENTITLED, BUT NOT DO ANYTHING THAT WOULD VAINLY
EXTEND THAT PERSON'S ACT OF DYING,

   IN MY PEDIATRIC SURGICAL PRACTICE I HAD COME UPON THIS KIND OF
SITUATION BEFORE, NOT OFTEN,,BUT ENOUGH TIMES SO THAT THE EXPERIENCE
WAS ENGRAVED IN MY MIND FOREVER:

A TRAGICALLY DISABLED CHILDmPARENTS WHO ARE CONFUSED, ANGRY,

GRIEVING,,,A DIVIDED MEDICAL STAFF, WHAT THEN?

   WITH "BABY DOE," THERE WERE SO MANY FACETS TO DEAL WITH, EVEN IF
THERE WAS NOTHING MORE TO THE DIAGNOSIS THAN WHAT WE LEARNED FROM THE

NEWSPAPERS, 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,


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  THIS IS QUITE DIFFERENT FROM THE DECISION SOME ARRIVE AT, OF NOT
TREATING AN OPEN MYELOMENINGOCELE, BUT FEEDING THE INFANT MEANWHILE,

  THE THIRD ELEMENT IN THIS CASE -- AND THE LAST ONE I WILL
HIGHLIGHT -- WAS THE FACT THAT "BABY DOE" DOES NOT FIT NEATLY INTO ANY
OF OUR LEGAL PIGEONHOLES,

  FOR EXAMPLE, THE COURT FIRST CASE FILED IN BLOOMINGTON BY SOME OF
THE MEDICAL STAFF WAS BASED ON THE INDIANA STATE LAW REGARDING CHILD
ABUSE AND NEGLECT, AS I'VE MENTIONED, BUT "BABY DOE" WAS NOT THE
USUAL VICTIM OF CHILD ABUSE AND NEGLECTmTHAT IS, HE WAS NOT A
NORMAL, HEALTHY CHILD WHO BECAME THE VICTIM OF PARENTAL VIOLENCE,

  THE KEY TO THIS CASE, THEN, WAS THE CHILD'S HANDICAPPING CONDI-
TION, THIS IS WHAT MADE IT NEWSWORTHYmTHIS IS WHAT 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,


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  NOW WE HAD TO ASK IF THE CARE GIVEN TO "BABY DOE" WAS THE KIND OF
CARE ANY BABY WITH ESOPHAGEAL ATRESIA WOULD RECEIVE? MANY PEOPLE
THOUGHT NOT, THE ASSOCIATED DOWN'S SYNDROME WAS, THEREFORE, EXTREMELY
SIGNIFICANT,  HAD "BABY DOE" HAD ONLY DOWN'S SYNDROME, HE WOULD HAVE
BEEN NOURISHED AND CARED FOR,  HAD HE HAD ONLY ESOPHAGEAL ATRESIA, HE
WOULD HAVE BEEN OPERATED ON AND CURED,

  EVENTUALLY THE ARGUMENT CENTERED AROUND SECTION 504 OF THE
REHABILITATION ACT OF 1973, OR PUBLIC LAW 93-112, THAT SECTION SAYS
THAT "NO OTHERWISE QUALIFIED HANDICAPPED INDIVIDUAL,,,SHALL, 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,"

  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, AS YOU KNOW, THOSE TWO LAWS FORBID ANYONE USING FEDERAL FUNDS
FROM DENYING BENEFITS OR SERVICES TO A BLACK PERSON BECAUSE HE OR SHE
IS BLACK, ,,OR AN HISPANIC PERSON, ,,OR AN ASIAN, ,,OR AN ELDERLY
PERSON,, ,OR A WOMAN,


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  IRONICALLY, WHILE THERE WERE FEDERAL REGULATIONS ON THE BOOKS
WITH WHICH TO ENFORCE TITLES VI AND IX, THERE WERE STILL NO REGULA-
TIONS FOR ENFORCING SECTION 504, THE DEPARTMENT OF HEALTH, EDUCATION,
AND WELFARE -- AS WE WERE THEN KNOWN -- HAD PROPOSED SOME DRAFT RULES
IN 1976 AND 1977, BUT JUST NEVER GOT AROUND TO PUTTING OUT THE FINAL
REGULATIONS,

  I ALSO WANT TO MENTION ONE OTHER MATTER OF LAW THAT CAME UP EARLY
IN THE HISTORY OF "BABY DOE,"  AND IT REMAINS AS AN ISSUE FOR MANY
PEOPLE, BRIEFLY STATED, IT IS THIS:

DOES THE STATE HAVE ANY BUSINESS AT ALL TO STEP INTO A MATTER
AFFECTING A NEWBORN CHILD AND GO OVER THE HEADS, SO TO SPEAK, OF
THE PARENTS?


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  AS YOU KNOW, 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, BUT THE ISSUE IS NOT THAT SIMPLE, WE HAVE
TRUANCY LAWS AND CHILD ABUSE LAWS AND IMMUNIZATION LAWS AND SO ON,
WHERE THE STATE DOES INTERFERE AND IS NOT CHALLENGED,

  IT'S POSSIBLE THAT THOSE LAWS SEEM TO BE ACCEPTED MAINLY BECAUSE,
FOR THE MOST PART, THEY CONCERN CHILDREN WHO ARE NO LONGER INFANTS,
I'VE OFTEN THOUGHT THAT, IF THE "BABY DOES" OF THIS WORLD WERE 35
YEARS OLD, THEY WOULD HAVE A NATIONAL ADVOCACY ORGANIZATION AND A
STRONG CONGRESSIONAL LOBBY, UNFORTUNATELY THEY ARE TOO SMALL, TOO
WEAK, AND TOO POOR,

  THERE IS NO CONSTITUTIONAL DEFINITION OF HOW OLD SOMEONE HAS TO
BE IN ORDER TO RECEIVE THE PROTECTION OF THE STATE, THERE IS NO
MINIMUM-AGE REQUIREMENT FOR NATIVE-BORN CITIZENSHIP,


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  FOR EXAMPLE, AN AMERICAN-BORN CHILD DOES NOT HAVE TO REMAIN IN
THE UNITED STATES FOR A MONTH,, ,OR TWO WEEKSmOR EVEN FOR ONE HOUR IN
ORDER TO QUALIFY FOR A SOCIAL SECURITY NUMBER, THE CHILD MERELY HAS
TO BE "BORN" AS AN AMERICAN, ODDLY ENOUGH THE PEOPLE WHO PROBABLY
KNOW THIS BEST ARE THOSE PREGNANT MEXICAN WOMEN WHO SLIP ACROSS THE
RIO GRANDE TO HAVE THEIR BABIES BORN ON UNITED STATES SOIL, THEY KNOW
THAT SUCH CHILDREN ARE US, CITIZENS AND CAN THEREFORE SEEK THE
PROTECTION OF OUR LAWS FROM BIRTH ON,

  I DON'T FIND THAT DIFFICULT TO UNDERSTAND, I NEVER DID, AND,
FOLLOWING THAT SAME LOGIC, I BELIEVE THAT A NEWBORN INFANT WHOSE LIFE
IS PUT AT RISK BY A PARENT, A GUARDIAN, A PHYSICIAN, OR BY WHOMEVER --
I BELIEVE THAT CHILD IS A CITIZEN AND DESERVES TO BE ACCORDED THE FULL
PROTECTION OF THE STATE,


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  "BABY DOE'S" LIFE BEGAN WITH MANY TRAGIC COMPLICATIONS, BUT I AM
CONVINCED THAT, 1,

  NONE OF THOSE HANDICAPS PUT HIM OUTSIDE THE PROTECTION OF THE
LAW,,,

  NONE OF THEM RELIEVED THE STATE OF ITS OBLIGATION TO PROTECT

HIM,,,

  NONE OF THEM PERMITTED ANYONE TO FURTHER JEOPARDIZE HIS HEALTH OR
HIS LIFE,,,

NONE OF THEM,

  I DON'T WANT TO BORE YOU WITH HISTORIC DETAILS BUT YOU SHOULD
KNOW AT LEAST THIS:


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*

EARLY IN 1983, DURING THE INTERVAL BETWEEN SECRETARIES OF H,H,S,
SCHWEIKER AND HECKLER, AN INTERIM FINAL RULE WAS PROMULGATED, I
HAD NOTHING TO DO WITH THIS,

*

THIS RULE WAS STRUCK DOWN AS THE RESULT OF A SUIT BROUGHT BY A

COALITION OF PROFESSIONAL AND VOLUNTARY ORGANIZATIONS ON

PROCEDURAL GROUNDS, NOT ON THE SUBSTANCE OF THE RULE,

*

THEN A "NOTICE OF PROPOSED RULE-MAKING," WITH A COMMENT PERIOD,

WAS PUBLISHED IN JULY 1983, AGAIN, I HAD NO VOICE IN THIS RULE

EITHER,

*

THE DEPARTMENT RECEIVED 17,000 COMMENTS FOLLOWING THE JULY

PUBLICATION OF THE NOTICE,


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9  IN NOVEMBER 1983 I ASKED SECRETARY HECKLER FOR THE PRIVILEGE OF
  TAKING A ROLE IN THE WRITING OF THE FINAL RULE, INASMUCH AS I WAS
  RECEIVING NEARLY ALL THE PUBLIC CRITICISMS ANYWAY, AND SHE

  AGREED,

*

MEANWHILE, THE AMERICAN ACADEMY OF PEDIATRICS IN CONCERT WITH
OTHER MAJOR ORGANIZATIONS SERVING DISABLED PERSONS PREPARED ONE OF
THE MOST IMPORTANT MEDICAL DOCUMENTS IN MY LIFETIME: IT WAS TITLED
"PRINCIPLES OF TREATMENT FOR HANDICAPPED NEWBORNS" AND WAS
INTRODUCED AT A PRESS CONFERENCE IN NOVEMBER,

*

USING THIS DOCUMENT AND CONSULTATION WITH THE AUTHORS, WE DRAFTED

AND PUBLISHED A FINAL RULE ON JANUARY 13, 1984, CONSIDERING ALL
THE CONSTRAINTS AND ALL THE POLITICAL AS WELL AS MEDICAL POT-HOLES

THAT WERE IN OUR PATH, I BELIEVE WE CAME UP WITH A GOOD REGULATION

THAT WOULD HAVE WORKED WITH A MINIMUM OF DIFFICULTY - IF THAT,


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*

BUT THAT REGULATION BECAME MOOT AFTER A SUIT BY THE AMERICAN
MEDICAL ASSOCIATION, WHO CLAIMED THAT THE LEGISLATIVE HISTORY OF
THE REHABILITATION ACT OF 1973 DID NOT INDICATE THAT CONGRESS
INTENDED TO COVER HANDICAPPED NEWBORNS UNDER THAT LAW,

  THE ETHICAL ISSUES REMAIN, AND THEY'VE SHOWN LIKE SPOTLIGHTS,
REVEALING SHARP DIVISIONS WITHIN THE MEDICAL COMMUNITY, PHYSICIANS --
LIKE THE REST OF AMERICANS -- ARE DEEPLY TROUBLED BY "BABY DOE" AND
ARE UNSURE OF WHAT THEIR POSITION SHOULD BE,

  ALTHOUGH OUR DEPARTMENT HAS BEEN SUED BY DIFFERENT PHYSICIANS'
ORGANIZATIONS, I THINK IT IS CLEAR THAT THERE IS NO SINGLE POSITION
THAT CAN BE LABELLED AS REPRESENTING THE THINKING OF "ORGANIZED
MEDICINE,"  INDEED, IT IS STILL DIFFICULT TO FIND CONSENSUS ON ALMOST
ANY ASPECT OF THIS ISSUE, BUT ON SOME THINGS I THINK MOST OF US HERE
TODAY MIGHT AGREE, FOR INSTANCE, 1,


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  "BABY DOE," A TINY BABY BOY WITH "MULTIPLE CONGENITAL DEFECTS/'
HAS FIGURATIVELY TAKEN AMERICA BY THE SHOULDERS AND HAS GIVEN US A
GOOD SHAKE, THAT HAS CERTAINLY HAPPENED,

  "BABY DOE" HAS ALSO ASKED US TO CONFESS HOW WE REALLY FEEL ABOUT
OUR FELLOW HUMAN BEINGS, LIKE IT OR NOT, THAT HAS HAPPENED, ALSO,

  AND, AFTER THE RHETORIC DIES DOWN, "BABY DOE" RE-APPEARS AND
PRODS US INTO REVEALING WHETHER WE ARE -- OR ARE NOT -- THE FRIENDS OF
THE HELPLESS, THE WEAK, THE HURT, THE INJURED, AND THE TROUBLED,

  IN FACT, "BABY DOE" HAS LITTLE PATIENCE FOR MOST OF THE RHETORIC
AND THEORY THAT HAS BEEN PASSED AROUND,,,,HE WILL NOT STAND FOR ARGU-
MENTS THAT DEFEND SOME PERCEIVED THREATS TO SELF-INTEREST,, ,AND "BABY
DOE" WILL NOT PATIENTLY WAIT IN THE BACKGROUND WHILE THE INSTITUTIONS
OF MEDICINE AND LAW AND RELIGION AND GOVERNMENT FIGHT FOR SOME
TEMPORARY PRIMACY,


26

  HE DID NOT PRESENT A PROFOUND MORAL AND ETHICAL CHALLENGE ONLY TO
HIS PARENTS AND TO THE MEDICAL STAFF OF BLOOMINGTON HOSPITAL, HE
CHALLENGED US ALL,

  THE CONGRESS, IN THE LATEST CHAPTER OF THIS MAJOR PUBLIC ISSUE,
RECENTLY ENACTED CHILD ABUSE LEGISLATION, COMPLETE WITH "BABY DOE"
AMENDMENTS, IT HAS SINCE BEEN SIGNED BY THE PRESIDENT AND IS PUBLIC
LAW 00-000, INSTEAD OF FEDERAL MONITORING UNDER CIVIL RIGHTS LAW,
THERE WILL BE MONITORING AND ENFORCEMENT BY STATE CHILD ABUSE AGENCIES
UNDER PERTINENT CHILD ABUSE AND NEGLECT LEGISLATION, WHICH, AS IT SO
HAPPENS, WAS THE ROUTE FOLLOWED BY THE PHYSICIANS AND BY THE LOCAL
GOVERNMENT IN THE ORIGINAL "BABY DOE" CASE IN BLOOMINGTON,


27

  I DO BELIEVE OUR APPROACH IN THE EXECUTIVE BRANCH WOULD HAVE BEEN

ALL RIGHT -- PROVIDED THE MEDICAL COMMUNITY AND THE PUBLIC HAD DECIDED
TO CHOOSE THE LIFE OPTION FOR HANDICAPPED CHILDREN,

  AND I'M SURE THE APPROACH OF THE CONGRESS CAN WORK, TOO -- K
PHYSICIANS AND SURGEONS AND MOTHERS AND FATHERS AGREE NOT TO MAKE
LIFE-OR-DEATH DECISIONS ON THE BASIS OF WHAT IS GOOD OR CONVENIENT OR
FINANCIALLY FEASIBLE FOR THEM BUT, RATHER, WHAT IS THE ETHICAL
IMPERATIVE ON BEHALF OF A DISABLED INFANT IN THEIR CARE,

  YOU SEE, WHEN WE SAY, "'BABY DOE' HAS A LIFE THAT'S NOT WORTH
LIVING," ARE WE NOT REALLY SAYING, "IT'S NOT WORTH IT TO B TO CARE
FOR HIM"?

   OUR LIVES -- AS HEALTH PROFESSIONALS -- AND THE LIVES OF THE
PARENTS AND THE DISABLED ARE REMARKABLY SHAPED BY THE CARE WE GIVE THE
HANDICAPPED, I THINK MY 40 YEARS OF HANDS-ON EXPERIENCE HAS CONVINCED
ME THAT ALL APSECTS OF MEDICAL ETHICS ARE DWARFED BY THE QUESTION:


28

"HOW OUGHT WE TO CARE FOR THOSE WHO CANNOT -- IN ONE WAY OR IN

EVERY WAY -- CARE FOR THEMSELVES?"

  WHEN WE'VE SETTLED THAT QUESTION, THEN WE CAN TURN TO THE
OTHERS,, ,FINANCES, RESOURCES, COMMITTEES, AND SO ON,

   NO ONE SAID IT WOULD BE EASY,  I'M NOT EVEN SUGGESTING THAT WE
HAVE AN OBJECTIVE AND GENERALLY ACCEPTED WAY TO PROCEED, WHAT I &I
SAYING IS THAT THE QUALITY OF LIFE WE TALK SO MUCH ABOUT IS MORE THAN

JUST A PLEASANT PHRASE, A BENIGN THEORY,  IT IS A SUMMATION,,,AN
AGGREGATE OF WHO WE ARE AND WHAT WE WANT TO BE, AND SO, OUR
DAY-TO-DAY DECISIONS TO ACTwTO SERVEwAND TO CARE ABOUT CHILDREN
WITH DOWN'S SYNDROME OR WITH ANY OF A THOUSAND OTHER DISABLING
CONDITIONS, WHEN ADDED TOGETHER, WILL PRODUCE A SUM THAT REVEALS THE
QUALITY OF OUR OWN LIVES,


29

  I WOULD SAY THAT SUCH AN EXCURSION INTO "HIGHER MATH" IS NOT LOST
ON THE MEMBERS OF THIS AUDIENCE,

  LET ME CLOSE BY SAYING THAT IT HAS BEEN A PRIVILEGE AND A
DISTINCT PERSONAL PLEASURE TO HAVE JOINED YOU THIS MORNING, BEST
WISHES FOR A SUCCESSFUL MEETINGwAND PLEASE, PLEASE KEEP UP THE GOOD
WORK,

THANK YOU,

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