premature babies!

 Laws governing Pre-mature babies

1. Baby Doe Redux? The Department of Health and Human Services and the Born-Alive infants Protection Act of 2002: A Cautionary Note on Normative Neonatal Practice
http://www.pediatrics.org/cgi/content/full/116/4/e576

2. Born-Alive Infants Protection Act (BAIPA)
Neonatial Resusiciation Program (NRP)
Emergency Medical Treatment and Labor Act EMTALA)
Child abuse Prevention and Treatment Act (CAPTA)

*Passed in congress in 2002
*The antiabortion rhetoric bill
*physicians currently follow with respect to the extremely premature infant
* Under BAIPA, DDHS interprets EMTALA to protect all “born-alive” infants; hospitals and physicians violating regulatory requirements face agency-sanctioned monetary penalties or a “private right of action by any individual harmed as a direct result.”
*”BAIPA indiscriminately defines “born alive” to include an infant “at any stage of development…regardless of whether the expulsion or extraction occurs as a result of natural or induced labor…”

3. Baby Doe Law U.S.C.A. Title 42, Chapter 67, Sec. 5106a. Grants to States for child abuse and neglect prevention and treatment programs

What it is?
- guidelines for the treatment of seriously ill and/or disabled newborns
- dictates what must be done for a child, regardless of the wishes of the parents
- opinions about a child’s quality of life are not valid reasons for withholding medical care

Background:
-result of several widely publicized cases involving deaths of handicapped newborns that resulted from withheld medical treatment.
-1982 case involved a baby with Down Syndrome whose parents declined surgery leading to baby’s death. #2
*Surgeon General at the time argued that the child was denied treatment not b/c it was risky but b/c the child was mentally retarded. #2


4. Nondiscrimination on the basis of handicaps: Procedures and guidelines relating to health care for handicapped infants
http://www.sris.org/prog/samples/cnmc/doctors/Ethic00.pdf



Things to consider
*Some premature babies will not be saved despite aggressive intervention
*Some may survive with devastating disabilities and the prospect of a severely impaired quality of life.

* Even when people understand that a baby’s outcome is overwhelmingly likely to be very poor, the temptation to continue technological intervention can be very strong.
*At times accepting that not doing something can be a better option than continuing interventions that are unlikely to have any positive effect and may cause prolong suffering for the baby.
*With certain dilemmas, many parents and physicians feel that a certain level of quality of life is more important than simply life itself.

Ruth Levy Guyer: Baby at Risk:

Rescue fantasies:

Doctors playing God

A chance to heal a very sick baby

A chance to use “cutting edge technology”

“wait and see” vs. “try it and see”

A chance to be a “hero” (to the parents, at least)

Often leads to tunnel vision: no thought to quality of life and possible future consequences

“one medical team bragged that with their technological expertise, they could “bring a peach back from death”…but for millions of other babies, the high tech interventions did not ensure good health or lives of high quality. Many babies born at risk remain trapped in lives of profound pain and great disability, and little awareness of their environments; some lead lives largely defined by suffering. The parents, siblings, other family members and friends suffer too”  - Ruth Guyer, Baby at Risk.

“who should have a baby”

“what is a good reason for having a baby”

“if one baby survives in this fashion, it is not worth saving any of the others” – mother of a NICU child with a horrible outcome

“survival is clearly not the only, or arguably, the most important measure of outcome.

what is the purpose of a baby’s suffering?

Is it ever compassionate kind or fair to babies and their families to keep very sick newborns alive?

 It is fair to the wider community to devote such massive resources to single individuals? Who should be speaking on behalf of a baby?

Is it ever right for medical and nursing staff to act in opposition to the baby’s parents, when the parents are the ones who end up taking the baby home?

 Is it ever fair for parents to insist that doctors and nurses provide care to babies whose situations are clearly medically futile?

Why do we westerners focus so much on mortality  but spend so little time talking about morbidity?

Controversial Case Studies:
http://www.sris.org/prog/samples/cnmc/doctors/Ethic00.pdf
Ruth Levy Guyer: Baby at Risk

Scenario 1

Baby  is born prematurely; hooked to a ventilator

After a few days you discover that gases from the ventilator had destroyed the blood vessels in the baby’s brain.

Your choices: take the ventilator off, or keep it on. If you wait too long, the baby will survive and begin to breathe on its own. If that happens, there’s a 50% chance that the baby will have severe disabilities for the rest of its life. What do you do? How do you explain this to the parents, without leading them on?

What could happen:

Parents dealing with a sick child

Stevie Wonder (link)

Planet of the Blind

“I find it hard to ignore the resemblance between the theatrics of the side-show exhibits and the dramatic actions in present day neonatal intensive care units… I find a disturbing detachments from reality… a feeble infant is plucked up and deposited into a theater-like setting in which superb technical experts make all-out efforts to support life.  And when this had been accomplished successfully the infant graduates. But no comparable effort is mounted to deal with the enormous problems that face the graduate at home and in the community” – Bill Silverman, a pioneer of NICU

“The NICU in the Unites States today has gotten completely out of hand. When I came into the field in the 1940’s, the hospital environment for babies was simple – clean, warm. Nurses would feed the newborn babies. Those who were meant to survive did, and if they survived, they did well. Those who couldn’t make it were allowed to die; they were said to be stillborn. People in this country act as though there are no limits.” – Bill Silverman

“Actually seeing the babies who come back with severe disability makes you realize probably  there is an outcome that is worse than death… in fact survival may be a misleading term as It is increasingly recognized that children who were thought to be [normal] are now being shown to have cognitive, behavioral and coordination problems [as they grow]…A surviving infant with multiple severe and neurodevelopmental disability may be viewed as a medical, social, and economic disaster” – Dr. Malcom Levine, “ Is intensive Care for Very Immature Babies Justified?” Acta Pediatrica, 2004.

“I never wanted neonatology to be a specialty because its focus is too narrow. It doesn’t allow doctors to see what happens next to the children they save.  It doesn’t allow them to see the consequences of their interventions as they fulfill their personal rescue fantasies.

Scenario 2

Stories:

Clara

David

Born prematurely with his twin (who was bigger).

His twin died about an hour after birth.

Doctors and nurses decided to “fight” for David’s life

David’s dad: “the NICU staff went out of their way to hide information from us about the likelihood the David would have neurological damage. The staff candy-coated information or gave us outright lies. We weren’t given guidance, for example, about what a ‘GRADE III brain bleed was. [the doctors and nurses were saying things like] “this baby is going to live!”

They told us: “he’s going to be a little behind” or “Oh well, sometimes these things work out.

David is over 13 years now. He functions at the level of a 3-year-old.

“He has no friends. He watches Barney. His problems are getting worse, but he is going to live. Who wants to have seizures? His life sucks and it adversely affects the life of his sisters.”

“We had the bad luck of geography, being at a hospital where they save every fetus”

Michael

“If the doctors and nurses knew what our life was going to be like, why shouldn’t we have know?  They need to be more honest with parents. Why did they tell me Michael would “catch up” by age 2? Why [did they wait so long to tell us Michael had retinopathy of prematurity? They had been checking his eyes all along] – I only learned about it accidentally because I was there during a handover”

“I have to be honest and say I feel like we live in a prison. We’re locked in the house because the outside world is not such a safe place for Michael, and yet neither is home. Everything has to be out of reach or locked away.

Preliminary conclusions

If NICUs are to continue to save extremely premature babies, then the whole “miracle baby” myth needs to be dispelled. People need to realize that these babies come at a price.

Statistics:

Britain. From March – December 1995

4004 babies born; 811 put in NICU; 314 survived and discharged.

50% of children in EPICure had disabilities by age 2 and half; 50% of those diabilites were severe.

40% of children had serious cognitive diabilites by age 6 (contrast with 2% of full-term children)

By age 9, 80% of NICU children had physical or learning disabilities and impairments

NICUs are money-making centers for pediatric departments of many hospitals

“technology and scientific knowledge  are only pieces of the whole human experience, but the medical establishment seems to act as if they are the whole…if we do not attempt soon to clarify what makes human life human, we may even see more monstrous dehumnizations…” – Raymond Lawrence

Questions
Is it the government’s responsibility to fight for premature babies?
Should the government be allowed to intervene in other people’s decisions?
Is it fair to let these babies suffer?
Should babies be considered humans