Lawyer involved in the death of a baby with Down Syndrome has a change of heart

She thought that letting this baby go since he will be a “blob,” might be the right thing to do. Then she had a baby with Down.

By Sarah Terzo

Janine Steck Huffman has a child with Down’s syndrome. But years before she gave birth to her son Nash, she was involved in the legal starvation death of Baby Doe, another child born with the same condition.

Baby Doe was born in Bloomington, Indiana, in April 1982. Besides Down syndrome, he had esophageal atresia, which prevented him from eating. Without a simple operation, he would starve to death.

When Baby Doe’s mother saw him for the first time, she reportedly said, “You look beautiful. You look different from my other two, but I love you anyway.”(1)

But that was before she learned Baby Doe had Down syndrome.

A doctor at the Bloomington Hospital, Walters Owens, discouraged the Does from proceeding with the surgery. He emphasized the burden of this baby’s care posed and their risk for a poorer quality of life. He also felt Baby Doe wouldn’t have a good quality of life.

He would later tell reporter Jeff Lyon why he was so opposed to Baby Doe’s survival. Owens’ nephew had a child who was similarly disabled. This child, born “malformed” in his opinion, required surgery and battled frequent bouts of pneumonia.” Owens said:

But the child has never been normal. It learned to walk at the age of four, and it has never learned to talk. It is, at times, aggressive and destructive. My nephew and his wife are very strong people and have handled it. But they’ve had no more children. She has devoted her whole life to caring for this child.

Obviously, this has colored my thinking on the survival of such children. I believe there are things worse than having a child [like that] die. And one of them is that it might live.(2)

So, because of Dr. Owens’ experience with one disabled child, he did not see the value of life for others facing similar challenges.

He spoke at length to the Does and managed to convince them, despite other doctors who wanted to treat the baby.

With Owens looking on, the Does told their team of doctors that they wanted their son to die. According to Lyon:

While his colleagues looked dumbfounded, Owens leaped up to congratulate the father. “You’ve made a wise and courageous choice. Here’s how I look at it. If you let the baby die, you’re going to grieve a little while. But if you go ahead with the surgery, you’re going to grieve for the rest of your lives.”(3)

Officials at the hospital took Baby Doe’s parents to court. And here is where Janine Huffman comes in. At the time, she was a clerk for Judge John G. Baker. After researching the topic further, it “resulted in legal conclusions that supported the parents, not with those that wanted to adopt Baby Doe.” This led to his decision to deny Baby Doe the operation. Years later, she would reflect:

When assumptions based on ignorance or outdated information abound, they perpetuate a society that will not embrace or even accept differences.

I understand these misconceptions all too well because I was once one of “them” . . .

[O]ne of those people with the preconceived notion that a diagnosis of Down syndrome brought nothing but pain to the families involved; that children with the syndrome have no purpose in life and grow up to be adults with no joy or friends . . .

I was asked to research the right to die issue, and that research resulted in legal conclusions that supported the parents, not with those that wanted to adopt Baby Doe.

This information made me think that letting this baby go since he will be a “blob,” might be the right thing to do.(4)

In court, Baby Doe’s parents made the argument that “[Children with Down syndrome] never had a minimally acceptable quality of life.”(5)

The hospital appealed the ruling.

There was a public outcry. No fewer than ten couples offered to adopt Baby Doe. One of them was Mike Lorentay, who worked with developmentally disabled children. He said:

I believe that every person, no matter who or what their ages, has a right to live. If need be, I’ll pay for the operation. I’m not well-off, but I’d pay for it and bring the baby back to Canada.(6)

Nurses in Bloomington Hospital revolted and refused to stand by and let the child starve. Baby Doe had to be transferred to another wing of the hospital, and his parents had to hire private nurses.

The case was appealed to the Indiana Supreme Court. Sadly, the Justices ruled against saving Baby Doe. Judge C. Thomas Spencer stated in the ruling:

The Court finds that the state has failed to show that the child’s physical or mental condition is seriously impaired or seriously endangered as a result of the inability, refusal or neglect of his parents to supply the child with necessary food and medical care.(7)

By now, Baby Doe was dying and suffering greatly. Lyon wrote:

Even as Spencer sat reading his decision at 8 PM on Tuesday night, the infant lay in his incubator, dying. His bodyweight had dropped from lack of nourishment.

He was crying from hunger, and his lips were parched from dehydration. His ribs were sticking out, the result of respiratory strain. That afternoon, when the stomach acid started corroding his lungs, he had begun to spit blood.

The nurses did what they could. They turned him over, gave him back rubs, and put glycerin-soaked swabs into his mouth to ease the dryness. They also diligently suctioned the blood from his throat.(9)

A few days later:

He had begun to hemorrhage freely, the blood oozing from his nose and mouth. Three times Thursday afternoon and evening he had stopped breathing, only to fight his way back.(10)

The nurses were allowed to give the baby shots of a sedative to keep him quiet and perhaps try and hasten his death.

The case was appealed to the Supreme Court of the United States. But Baby Doe ran out of time. Six agonizing days later, Baby Doe died.

The nurses who cared for Baby Doe were traumatized by the experience. One nurse, Teleatha McIntosh, said:

I feel that a terrible injustice was done. I couldn’t sleep for a long time afterward. Every time I closed my eyes, I’d see that baby lying there bleeding and fighting for breath . . . .

Without a doubt, it was the most inhumane thing I’ve ever been involved in. I had all this guilt, just standing by giving him injections and doing nothing for him.(11)

Nurse Bonnie Stuart said:

It still seems like a nightmare to me. I still can’t believe it happened in today’s society. I said, “This is wrong,” 50 times a night as I was taking care of him. He wasn’t limp like they said. When I’d give him a shot of Demerol, he’d flinch. He’d open his eyes when I stroked his head. He looked like a perfectly normal little boy.(12)

As for Huffman, who contributed to Baby Doe’s death, she gave birth to a child with Down syndrome.

Huffman didn’t know the son she carried in her womb had this condition until his birth. Upon learning of his diagnosis, she said:

I was in shock. Images ran through my mind of the baby I thought we would have — the baby we wanted to have — and tears started flowing.

I wish I had known then what really lay in store for us. Nash is our source of amazement every day.

He is one smart little boy and could recite his ABCs and basic colors, sight-read more than 10 words, and use at least 130 signs of American Sign Language before the age of three.

More importantly, he has taught me a lesson I still work through every day — that the value of a life, of a human life, of a child, is measured not by how much he or she can accomplish, but how much he or she can teach others about what really matters.

Like how to accept people with all kinds of different “abilities.” Our life is better than good . . .

We are advocates now for Nash and for others with Down syndrome. We also know that Nash will be his own advocate, and that he will make a difference in the world.(13)

Tragically, Huffman learned too late about the preciousness of life to have helped Baby Doe, though thousands tried to advocate on his behalf. His death will be remembered as a grave injustice.

Footnotes

1. Jeff Lyon “The Death of Baby Doe,” Chicago Tribune, February 10, 1985, p. 12

2. Ibid., 13

3. Ibid.

4. Janine Steck Huffman “It’s Better Than Good” in Kathryn Lynard Soper Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives (Bethesda, Maryland: Woodbine House, 2007) 39–40

5. Quoted in Melinda Tankard Reist Defiant Birth: Women Who Resist Medical Eugenics (North Melbourne, Australia: Spinifex, 2006) 50

6. “Race on to Keep Handicapped Baby Alive” Detroit Free Press April 16, 1982

7. Jeff Lyon, 17

8. Ibid., 17

9. Ibid., 17

10. Ibid., 23, 16

11. Ibid., 23

12. Janine Steck Huffman “It’s Better Than Good” in Kathryn Lynard, p. 42–43

13. Janine Hoffman’s blog, Mauzy’s Musings