American Academy Of Pediatrics Recommends Individualized Counseling For Parents Of Premature Infants
For the tiniest infants — those born before 25 weeks in the womb — survival is never guaranteed, and those who make it may be left with severe disabilities.
These micro-preemies are born in what’s known as the “grey zone.” Whether or not to resuscitate them depends on the decisions made by individual hospitals, doctors and parents. Decisions can vary greatly even among hospitals in the same area.
A new statement from the American Academy of Pediatrics aims to improve the way those decisions are made. The statement suggests that doctors individualize counseling for parents based on the particular baby’s chances of survival and the family’s goals for their child.Use Our Content This KHN story can be republished for free (details).
“People sometimes will say at this gestational age you should do nothing and at this you should do everything, but there are many shades of grey,” said Dr. Kristi Watterberg, chair of AAP’s Committee on Fetus and Newborn. “It’s really difficult to tell people prescriptively what you must or must not do. We don’t know.”
Watterberg, who is a professor of pediatrics at the University of New Mexico in Albuquerque, said outcomes for babies born so early are constantly evolving as the medicine used to keep them alive improves.
“We’ve been having the same discussion for many, many years, but the gestational age at which we thought we couldn’t do anything was wrong and keeps changing over time,” she said.
Infants born before 22 weeks gestation are almost never resuscitated. Survival before 23 weeks without significant neurologic impairments “is extremely rare… even with full resuscitation and intensive care,” according to the report, which considers 22 weeks the lower threshold of viability.
But outcomes for babies born all the way up to 25 weeks gestation are often poor. “Most surviving pre-term infants born before 25 weeks gestation will have some degree of neurodevelopmental impairment and possibly long-term problems involving other organ systems,” according to the report.
Outcomes for each individual case are difficult if not impossible to predict. Some babies can beat the odds and survive without major disability. Babies born at higher birth weights, singletons and females, for example, tend to have better chances of survival.
With so much uncertainty, the final decision of whether to resuscitate and provide intensive care to a micro-preemie usually falls to the parents.
“[T]he risk of permanent, severe neurodevelopmental and other special health care needs affect both the infant and the family and, for some parents, may outweigh the benefit of survival alone,” according to the report. For others, even the slimmest chance of survival is reason to pursue all possible medical options.
Some families base their decisions on statistical chances of survival, while others, rely more on religion, spirituality and hope.
The AAP asserts that physicians should be “sensitive to the religious, social, cultural and ethnic diversity of the parents” – and to any language barriers for non-English speaking parents.
Whenever possible, decisions about whether to resuscitate should be made before the birth, the academy says. And visual aids, including graphics and pictures can help enhance parental understanding of possible complications.
Dr. Liz Rogers, a neonatologist at the UCSF-Benioff Children’s Hospital in San Francisco, is spearheading an effort among hospitals in Northern California to better standardize the process of decision-making on such infants. Rogers says she’s pleased that the AAP is recommending an individualized approach to counseling families rather than specific recommendations for babies at various gestational ages.
But she is concerned that the AAP report is overly optimistic overall about survival.
“I worry that the message being delivered to many pregnant women is that the outcomes are better than they really are. It still requires aggressive, intensive painful procedures to have the babies survive, and many may still have a bad outcome.
“As a general practice, most of us don’t consider 22 weeks to be viable,” Rogers said. “What I worry about is that we won’t know that we’re at the limit of viability until we’ve gone beyond it and are looking back at it.”
Doctors may paint very different pictures of survival based on their own values and experiences, she said, and families may not understand the risks. It’s crucial, she said, that doctors communicate that they will support simply providing the baby with comfort care as much as they support an aggressive resuscitation.
Truth is, I dreaded my children’s sexual education.
I’d read that parents can be a powerful force for smarts about sex, so I’d tried to script imaginary heart-to-hearts. But in my head, they all sounded like this: “Please don’t do these incredibly stupid things that I did when I was young.”
So I procrastinated, abetted by the younger generation’s point-blank refusal to let me even broach this most awkward of topics. Then, last year, word came home that middle-school health class would use a curriculum called “Get Real” that involved extensive family homework activities.
“Now I’m in for it,” I thought.
But in fact, I was in for a shockingly pleasant surprise — one that more and more parents may experience in the coming years if Get Real’s popularity continues to grow. As of this year, it has been adopted by 200 schools in seven states — 175 of them in Massachusetts. That’s up from 132 schools in 2012.
And in recent months, Get Real has scored two victories: An analysis by the Wellesley Centers for Women reported that students who go through Get Real do become likelier to delay sex, and the federal government put it on a list of “evidence-based” sex-ed programs.
No way is Get Real, which was created by the Planned Parenthood League of Massachusetts, for everybody. It strongly promotes abstinence as the healthiest choice for young people, but it’s not the sort of “abstinence-only” program that many parents and schools seek; it also includes teachings on birth control and preventing infection.
But perhaps more than any other curriculum out there, it pulls parents into the sex-ed endeavor, and here’s my pleasant surprise: It wasn’t awkward.
The Get Real homework prompted conversations about friendships, about feelings, about life lessons. I got to reminisce about my first crush, and talk about how important I think it is to stand up for yourself with a boyfriend or girlfriend. I even got to vent about how perniciously relationships are portrayed in that detestable high-school-girl series, “Pretty Little Liars.”
Sure, the course teaches intimate anatomy and the changes of puberty, but the body part it seemed to focus on most was the heart. It was teaching — well, love. Or rather, the skills that can make love better. Healthier. Skills like self-awareness and communication — useful in their own right, and also in service of sex-ed goals like preventing pregnancy and infections.
“We believe that if young people are able to develop healthy relationships in all aspects of their lives, they’re going to be that much better able to negotiate healthy sexual relationships,” says Jen Slonaker, vice president of education and training at the Planned Parenthood League of Massachusetts.
At this national moment of rising discussion about campus rape — from “Missoula” to this week’s New Hampshire prep school trial — the need for such skills has never seemed more urgent. And they take time to develop, says Nicole Cushman, executive director of Answer, a national sex-education organization based at Rutgers University.
“When people talk about sexual assault and rape prevention on college campuses,” she says, “the sad truth is that by the time young people get to college, it may be too late, because we haven’t really laid the groundwork by teaching them these basic concepts about communication and relationships from a younger age. So I really believe that comprehensive sex education is sexual assault prevention.”
Ashley, a Boston high school senior who is on the Get Real Teen Council, went through the curriculum beginning in middle school but says she really started seeing its effects when she got to high school.
“I know that what I learned in Get Real classes made me see certain red flags in my friends’ relationships and my own relationships, and helped me solve what I need to do in order to get away from the red flags,” she says.
One friend who took the class with her drew on it to resist sexual pressure, Ashley says: “She didn’t know if she was ready to have sex, and she touched upon the consent part — she was like, ‘I don’t have to do this, necessarily. It’s like — consent. It’s not fair. I don’t have to engage.’ “
Get Real not only teaches principles like consent, it actually has the students practice them in role-plays — even if they likely won’t face certain situations for years.
For example, Slonaker says, one scenario might portray a couple in which one partner “wants to try some sort of sexual behavior and the other person isn’t ready for that. And so how do they have that conversation? Because it’s absolutely a conversation, and it’s a continuous conversation.”
Also key, she says, is that after such role-play scenarios, the teachers help the students process what happened, asking questions like, “What was challenging about that? How do you think someone might feel in that situation?”
“It’s all about the development of the skills we want our kids to have when they go out in the world on their own,” Slonaker says. “It gives them the chance to practice something, stretch or strengthen that particular muscle in their brains that they’re really just developing in eighth grade, and have that safe place to fail so they can do it differently and better the next time.”
Sign Of The Times
Get Real is not unique among sex-ed courses in teaching relationship skills, but Slonaker says that emphasis has contributed to its success, aligning nicely with the rise of “Social Emotional Learning” in schools.
Its growing popularity also jibes with two other sex-ed trends, Cushman says:
1. Federal support
Historically, the federal government tended to invest mainly in “abstinence-only” sex education, she says, but the Obama administration has shifted toward funding “evidence-based” programs that prove their effectiveness.
Though the actual decisions on which sex-ed program to use happen at the local level, Cushman says, that federal support has helped developers of “comprehensive” programs like Get Real, which encourage kids to delay sex but also include information about contraception and preventing disease, along with relationship skills.
(Given the recent news stories about Planned Parenthood and fetal tissue, I asked Slonaker what Get Real teaches about abortion. She emailed: “Abortion and other pregnancy options are not included in the Get Real curriculum. If a student asks a question regarding abortion, the educator answers in a factual manner. As in any other discussion in Get Real, the school staff encourages students to talk to parents and other caring adults regarding their values related to the subject.”)
2. What works
Back in the early days of AIDS, Cushman says, educators thought it would be enough just to provide basic information — about condoms, for example. Since then, “we’ve come a long way in understanding what it really takes to impact young people’s behaviors,” she says, and “not just their behaviors but their skills, their attitudes, that all contribute to lifelong healthy behavior. It takes a lot more than just providing a plumbing lesson on reproductive anatomy.”
These days, she says, it’s known that effective sex ed has to be based on sound theory, has to be suited to the student’s culture and age, has to be highly interactive, and needs to go beyond sharing knowledge. It has to actually build skills.
Get Real fits nicely into those trends; where it may be unique, Cushman says, is in the extent of its family involvement. And that, too, is evidence-based, she says: Research finds that parent communication can make kids likelier to delay sex and practice safer sex.
All that communication is not always easy, of course. Slonaker says Get Real teachers report that one of their biggest challenges is how to encourage families to complete all the activities. “Some kids feel too embarrassed to bring them up at home,” she says. “Some parents don’t want to engage in the conversation, some parents are too busy with jobs and other commitments, some kids are unable to identify a caring adult in their life with whom they can have these conversations.”
But even if not all 27 of Get Real’s family activities get done, she says, even a little parent conversation can make an impact.
The Wellesley analysis on Get Real found that by the end of eighth grade, 16 percent fewer boys and 15 percent fewer girls had sex compared to their peers who had a different curriculum.
I Never Have To Tell Them!
I’m filing this under “what I learned today:” The sort of parent-child talk that can help teenagers make better sexual choices does not have to revolve around our past idiocy at all.
“A fear we often hear from parents,” Slonaker says, is, “‘Wait a second, you’re talking about family activities? Are you going to have my kid ask me about my sexual activities?’ And that is absolutely not what the family activities are designed to do.
“It’s up to the parent to make the decision of when or if they share information about their own sexual experience,” she says. “And so the conversations are much more guided around relationships, or, ‘Tell me about the first relationship you had — what was really great about that relationship? What do you remember about that relationship?’ ”
So in other words, I pressed Slonaker, I never have to tell my kids about my past mistakes?More CommonHealth This Week:
“No, you don’t,” she reassured me. “It’s really about articulating the values and beliefs that you want your children to carry around sexual health.”
Joy! I can articulate my values, I think — they’re pretty golden-rule-based. And I have Ashley’s experience to spur me on. The Boston high school senior says the Get Real activities really helped open up channels of communication with her mother, including discussions of her mother’s relationship with her father.
“I was blown out my mind when she said certain things,” Ashley recalls. “I said, ‘My father did that? Really?’ It shows how we’re alike, sort of, and what she went through, I can go through as well, or have her help me avoid those same issues.”
Now, Ashley says, she’d be able to say, “‘Ma, I need you to come to the hospital with me to get this checked.’ And it’s much easier to be able to talk relationships, because moms and parents know best. They always do. And you might not want to talk with them because oh, this is awkward, but at the end of the day, they will always be there for you.”Related: