Presented to the 10th Anniversary Conference of the National Association for the Severely Handicapped
San Francisco, California
This was a natural and comfortable speech for me having spent all of my professional career at the Children's Hospital
of Philadelphia at the University of Pennsylvania, involved with handicapped children or as we came to call them later on,
"Special Needs Children". Now addressing an organization that has been on the cutting-edge of care for the severely
handicapped seemed natural.
During the introduction, I mentioned Madeline Will, the Assistant Secretary for Education for Special Education, a personal
friend and a long-time ally in fighting for the rights and privileges for severely handicapped youngsters.
This was the second time that I had the opportunity to speak about "Baby Doe" and the "Baby Doe Regulations"
although some subsequent speeches will dissect the problems much more thoroughly than this rather superficial summary of some
of the problems associated therewith.
In reference to "Baby Doe", I'm speaking here after the first "Baby Doe" regulations had been written,
after Health and Human Services had been challenged and taken to court, after Judge Gerhard Gesell had ruled against the governments
procedure and we went back to revise what we had done in a more acceptable fashion to the courts.
Our second try with regulation was published on July 5", and between then and September 6th the office of Civil Rights,
which is the sponsor of this regulation, received 16,000 comments. Contrast that with the original "#504" regulation,
the one that was the "host" so to speak, for the "Baby Doe Regulation", which drew little more than 700 comments
before it became final back in May of 1977.
Because the "Baby Doe Regulation #l" was still in the process of receiving comments, I could not talk about specifics,
but rather use this occasion to talk about the philosophy behind the establishment of such regulations.
Many of the philosophical points made herein are part and parcel of my forty-year experience as a pediatric surgeon where
I dealt with "Baby Does" probably as much as any physician in America ever had. My reference to "Baby Doe"
here refers to infants having congenital defects incompatible with the life but amenable to surgical correction.
Although this lecture expresses my sentiments, developed over a life-time in pediatric surgery and a part of public health
experience since, I do believe it is excellent background for teaching not only the doctor/patient relationship, but especially
in handling the problems that the family, community, and profession face when dealing with a handicapped child.
Baby Doe Regulation #2
Congenital birth defects rising
Competency in care
Dilemmas of the neonatal nursery
Every life uniquely important
Infant mortality declining without rise in morbidity
Life as an entitlement in contrast to the act of dying
Narrowing of the "Gray Area" in decision making
Neural tube defects dropping
Profile of physicians & parents who care for the handicapped
Restraining hopelessness vs. false hope
Self-determination of handicapped children & young adults
The appropriateness of saving every human life
The effect of mere predictions of Baby Doe Regulation #l on the health profession
The role of conscience in the care of the handicapped
The rewards of caring for the handicapped
Training of physicians to deal with the whole handicapped child