in pregnancy when you do not know whether or not you are dealing with a pregnancy or not. In that respect, you would be preventing a pregnancy. Although some people maybe would consider that giving something, such as an IUD, as an abortifacient. They consider that in this realm.

We are dealing with something that we really have no proof on. I consider that still as preventive medicine, preventing a pregnancy. Beyond that, we would be destroying something that is already created.

Senator BAYH. Regardless of the biological effect of the IUD or the morning after pill, there would be a significant difference of opinion as to the effect these devices or substances would have on the body. As long as it is in the area of the unknown, you are not concerned about whether it is abortifacient or otherwise.

Dr. CZARNECKI. That does not concern me.

Senator BAYH. You know, there are a number of witnesses who have testified-specifically Senator Helms, who is a sponsor of one of the amendments before us that life begins upon fertilization, when the sperm and the egg get together, and that anything that is done after that time would, indeed, be the same as a clinical abortion as far as the moral aspect of taking life.

Dr. CZARNECKI. I agree that life begins at conception. I know that there are others that believe that we are not concerned until there is implantation. What I am concerned with is the practicality of the whole thing. The situation that exists today is appalling, and anything might be better.

In a given individual, at a given time, we cannot detect a pregnancy. And even though life begins at conception, it is an unknown; it is a gray zone. There is no way that we can prove a pregnancy. To me, giving a woman medication at that time is not destroying anything, because it is in the realm of the unknown. No proof positive can be done of a pregnancy. That is acceptable to me.

Senator BAYH. We all have to make this decision for ourselves. On the question that we are facing on this side of the table, there is a very great division of opinion. Theologians, physicians, mothers are divided. We have had all of these different groups, and we will have others, and I am sure we will find them divided.

There has been a strong moral question raised about abortion, the right to protect a life vis-a-vis the right of a mother. And you sort of come down with a mixture.

Dr. CZARNECKI. They are not mixed after a diagnosis of pregnancy. Senator BAYH. Let me finish here. I want one more chance to define your reasoning here where you come down in a very strong moral standpoint of the child and the wrong of taking that life. But from a practical standpoint, during a certain number of days you are willing to waive your feeling of morality.

Dr. CZARNECKI. There is much discussion on this intrauterine device, whether it is or is not abortifacient. This is why I brought this up in particular today.

Senator BAYH. The reason I pursue that is that you seem to be following the medical testimony which reasons if you can prove positively that a woman is going to have a baby that has Tay-Sachs, then would it not be at least within the realm of possibility to con

sider the practical aspects of giving that woman the right that you give any woman during the first 14 days?

Dr. CZARNECKI. Society, I am sure, has to decide this after a diagnosis.

Senator BAYH. What do you feel?

Dr. CZARNECKI. If you have a decided diagnosis of life, you do not take it; you just do not. That is where I stand. If science can determine today an hour after I conceive that I am pregnant, if there is any practical way of doing that, then that is what we have to deal with, and we should not destroy that. There is a definite point in time

Senator BAYH. One last question: How do you weigh the value of life in those instances-and I know they are not frequent-where a choice must be made between the life of the mother and the child? Dr. CZARNECKI. They are very rare. And if you have a mother in distress, you must protect the mother's life. I would do an abortion to save the life of a mother, if it should ever occur. And it is very rare today in medicine.

Senator BAYH. Senator Cook, I appreciate your being here with us this morning.

Senator Cook. Thank you very much, Mr. Chairman.

Having just come in, I hope you would not mind if I thank the Doctor very much for what I have heard. And if I do have any questions to submit to her, I would be delighted if she would respond to them. I would so in writing.

Senator BAYH. Thank you, Doctor.

I should say for the record that Senator Cook has been one member of our committee who has shown great interest and concern by his presence, has made a significant contribution in our efforts to find the right way to deal with the problem.

Our next witness is Kay Jacobs Katz, National Capital Tay-Sachs Foundation.

Ms. Katz, we appreciate your being with us.

STATEMENT

OF KAY JACOBS KATZ, NATIONAL CAPITAL
TAY-SACHS FOUNDATION

Ms. KATZ. Mr. Chairman and members of the subcommittee, I would like to introduce myself and thank you for the opportunity to testify in opposition to proposals intended to outlaw legal abortion in the United States by amending the Constitution.

My name is Kay Jacobs Katz of Silver Spring, Md., and I am the mother of a child who had Tay-Sachs disease. I appear here today to express my personal beliefs and to represent the National Capital Tay-Sachs Foundation, an organization committed to public education, cure research, health care, and prevention of Tay-Sachs disease and its allied disorders.

These genetic diseases, known as sphingolipidoses or lipid storage diseases, are characterized by inborn errors of lipid metabolism. In each disease, an enzyme necessary for normal human function is either deficient or inactive. In Tay-Sachs disease the crucial enzyme is hexosaminidase-A which results in neurological deterioration and early death. It is estimated that one in every 30 American Jews of Eastern European ancestry is a carrier of this trait.

A carrier is totally unaffected by the disease, but a blood test can determine that the amount of activity of "hex-A" is somewhat less than that of most individuals. Statistically, one in every 900 Jewish marriages is between two carriers who are therefore capable of producing a child with Tay-Sachs disease. One child in every 3,600 births to Jewish couples will be afflicted with Tay-Sachs disease, and every child born with this disease will die by the age of 4.

I am not here to speak about every facet of the abortion question, but to help develop an understanding of the need to preserve the right to abortion when a fetus is known to have Tay-Sachs disease or a comparable disorder. There are a great many people who wish to deny potential parents of infants with fatal genetic disorders the option to terminate affected pregnancies.

However, once a doomed baby is born, these same people who insist on his birth disappear, leaving total responsibility to his parents. Besides the heartbreak, mental anguish, and, quite frankly, physical burden that the parents must endure, there is the problem of finding people willing or qualified to help in caring for such a child.

In most cases the families seek out institutionalization at some point because of increasing medical problems or simply overwhelming demands on the parents' time. Most retardation centers are inappropriate, and hospital care costs are prohibitive. Most insurance companies refuse to cover prolonged hospital care on the basis that it is custodial care even though the medical profession disagrees. Even those insurance companies that do cover a prolonged hospital stay will not cover the cost of a nurse at home, which for many families would be a more acceptable form of help.

For those afflicted families fortunate enough to live in Montgomery or Prince Georges County in Maryland, there is a very progressive, State-operated retardation center whose hospital is very satisfactory and whose nursing staff is loving and caring. But to place one's child in even such a fine center is a terribly sad event, as it is an admission that one more aspect of normalcy is being stolen from the child's life. I strongly urge every Senator to visit the patients in the Great Oaks Center Hospital building in Silver Spring, Md., and see for yourself exactly whom you will be voting about.

It all started for us 42 years ago when we had our first baby. She was beautiful and, we were assured, healthy and normal. She grew and developed very normally for several months, or so we were told. There were a few little problems such as a pronounced startle response which she never outgrew, but the doctor reassured us that she was normal.

By 10 months of age, she had begun to grow weak and to lose some of the skills she had learned, and once again I pleaded_with the pediatrician to tell me what was wrong. Again, as before, I was put off. Finally, a couple of weeks prior to her 1st birthday, he admitted that her development was not progressing normally, and we were referred to a specialist at Children's Hospital here in Washington. We brought Joann home the day before her 1st birthday with the knowledge that she had Tay-Sachs disease, that the birthday cake placed in front of her the next day would be the only one she would ever see, and that she would no doubt be dead before her 4th birthday.

We made every effort possible for Joann's sake to continue to provide a normal environment for her. As she continued to loose skills and awareness, we adapted our lifestyle and care of her to her needs. I took her for physical therapy and learned the exercise program myself so I could prevent stiffness from taking over her body as she moved about in her crib less and less.

Although we made a valiant attempt to believe that a cure would come along in time to save her life and restore some of her intelligence, each passing week took more and more away from her. So as not to dwell on her deterioration, I will summarize by stating that by the time she died on May 28, 1973, she was a blind invalid, seizuring and drowning in her own secretions, requiring daily enemas, naso-gastric feeding-fed a liquid diet via a tube plunged down the nose into the stomach-and spending more time in oxygen and on antibiotics than not. These were the very real events we had to stand by and helplessly witness, and when you love someone the way we loved Joann, you would do anything to reverse the insidious process that was taking her away from you and, short of that, anything to prevent its recurrence.

When Joann was diagnosed, we learned that Tay-Sachs disease is an incurable degenerative disease of the nervous system, uniformly fatal by the 5th year of life; beyond all that, it is hereditary. Not only was it going to kill my daughter; it would mean that if I were to conceive again, there would be a 25 percent chance of any fetus being affected with the disorder.

We learned that in the case of this particular genetic disease, and a growing number of others, prenatal diagnosis was now possible, and that if the fetus in question were affected, safe, legal termination of the pregnancy was also possible. We had a big decision to make because we desperately wanted more children of our own. After several months of soul searching, we decided to go ahead and plan a second pregnancy. I refused to become pregnant, in other words, until I was convinced that there was no hope for Joann, and that I would have the courage to undergo an abortion rather than produce another Tay-Sachs baby.

Besides her own short, hopeless life, there remained the fact that we had established a love relationship with Joann before her illness became apparent. With a subsequent baby, we would know from the day of his birth of the possibility of his impending death and could never have given him the same loving kind of care we gave Joann and feel we owe our children. At some point the instinct of selfpreservation forces one to protect oneself from pain.

Therefore, when I did become pregnant, I was referred to a physician specializing in genetic counseling who saw Joann and discussed her with me and who later met with my husband and me to explore our attitudes and feelings and to make sure we knew all the pertinent information we needed. He assured us that he himself would be performing the prenatal test known as amniocentesis; the necessary cell cultures would be grown in his laboratory and sent for analysis to the National Institutes of Health. If the results were unfortunate, he would perform the abortion himself and stay with me afterwards to be supportive and help in any way possible, for he

knew how hard it would be for us, but also understood why and how we had made such a decision.

All this information is really background material to help you understand why we feel so strongly that by depriving couples like us of the option of having children unaffected by such serious and hopeless disorders, you are really depriving us of having children at all. Most of us would simply not be foolhardy enough to knowingly risk a pregnancy without this alternative. We now have a healthy, normal 2-year-old son, and we expect another baby free of TaySachs in July. If an antiabortion amendment is passed and ratified, I will be one of the lucky few who had the freedom to have such a family in the few short years while the medical and scientific capability was available and legal.

Senator BAYH. Excuse me for interrupting.

Those bells mean we have 5 minutes to go vote. If you will excuse us for interrupting, we will be right back, and I apologize for interrupting your very pertinent testimony.

A brief recess was taken.]

Senator BAYH. We will reconvene our hearing.

Please proceed, Ms. Katz.

Ms. KATZ. To backtrack a little bit, as soon as we learned of its existence, we joined the National Capital Tay-Sachs Foundation, which was composed of parents whose children were dying or had died of Tay-Sachs disease. Until shortly before our entry into the group, its main purpose had been one of mutual moral support for the parents, but it had just become involved in planning, supporting, and executing the first community screening for a genetic disease, which took place on May 2, 1971, in Bethesda, Md. For the first time it was theoretically possible for a carrier couple of a genetic disease to selectively have a normal family of its own without first suffering the heartbreak of having a baby afflicted with the disorder.

If you think this idea was not popular, you are mistaken. Over 1,300 people came to roll up their sleeves and have a sample of their blood drawn in order to avoid personal tragedy.

These voluntary testings have continued under the auspices of Johns Hopkins Hospital, and here in the District of Columbia metropolitan area we hold them about twice a year. Each couple needs an appointment for the test, and they are given preliminary information over the phone. We try to make certain that everyone who comes to be tested understands what the test is for and what the results will mean. At the testing center, genetic counseling is available. This plan. has been copied in major metropolitan areas all over the United States and in quite a few other countries as well.

Tay-Sachs is only one of a number of related disorders. It is also the most common. For parents of children suffering with some of the related diseases, there is as yet no prenatal diagnosis, and these couples are anxious for medical research to find the means to make it available so they, too, may have children with a fair chance for survival. However, because of the cutbacks in funding for medical research in this area on one hand, and the threat of an antiabortion amendment on the other, these couples would have to give up hope of having more children.