Date: 2/26/2009
By SHAYA TAYEFE MOHAJER
Associated Press Writer
LOS ANGELES (AP) — Nadya Suleman has voiced concern that the hospital where her octuplets are being cared for may prevent her from taking them home when they’re healthy enough in coming weeks.
But in reality, hospitals don’t prevent healthy children from going home — child protective services do.
And that’s only if a complaint has been filed. Hospital employees are mandated to report to county authorities any concerns they have about unsuitable home environments, a mother’s emotional or psychological instability, or any other situation that could result in harm to a child.
According to talk show host Dr. Phil McGraw, the 33-year-old unemployed mother called him Tuesday and said hospital officials were worried that her current living arrangement wouldn’t be suitable.
Stu Riskin, a spokesman for Los Angeles County Department of Children and Family Services, said the agency cannot comment specifically on Suleman’s situation and could not confirm whether a case had been opened on her family.
But in the event a child welfare complaint is made for a baby ready to leave the neo-natal intensive care unit, it’s followed by interviews with family and doctors and in-home visits in an effort “to leave no stone unturned so that we can make the best possible assessment,” Riskin said.
If a home is determined to be unsuitable, the county first looks to relatives willing to care for the children. If none is found, a foster home is sought, Riskin said.
Suleman gave birth to the octuplets at Kaiser Permanente Bellflower Medical Center on Jan. 26, when they were nine weeks premature. She has six other children, lives in her mother’s three-bedroom home in Whittier and has relied on food stamps and disability income to provide for her family.
She expects the children to come home within the next two weeks, she told McGraw in a show that aired Wednesday. Part two of the interview is scheduled to air Thursday.
Kaiser Permanente spokesman Jim Anderson refused to provide details of Suleman’s case, citing privacy concerns, and further refused to elaborate on the health provider’s normal procedure for discharging neo-natal infants.
But according to experts and information published on the health provider’s Web site, typical protocol for babies discharged from NICU is that the hospital’s hired social workers and discharge planners work with parents to coordinate the child’s return to the home.
“This discharge plan has to account for the fact that these children, because they’re small, they might require special consideration,” said Lizelda Lopez, spokeswoman for the state’s Department of Social Services, which oversees the county-run child welfare programs. “The hospital has to plan for that and has to work with Ms. Suleman.”
It is normal for hospitals to provide parents of premature babies with a host of services to prepare them to care for the babies at home, according to Vicki Bermudez, a neo-natal intensive care unit nurse at the Kaiser hospital in Roseville and a California Nurses Association regulatory policy specialist.
That includes environmental assessments and parenting instruction. Home consultations or home visits from nurses are not unusual, Bermudez said.
“This whole issue has been very emotional, and there have been many judgments made by the public. But nurses and doctors aren’t there to make judgments,” she said. “They just want to make sure the children and family are getting the services they’re entitled to and what’s in the best interest of those babies.”
The babies must be medically stable before they can be released, which means they should be feeding well and able to breathe on their own, though they are sometimes sent home with oxygen or monitoring equipment, said California Nurses Association co-president Geri Jenkins, also a registered nurse.
“The bottom line is they won’t be sent home until the medical team is sure — and they’re evaluated to make sure — they’re strong enough to eat and grow and thrive,” Jenkins said.
In a video posted on the celebrity news Web site RadarOnline.com on Wednesday, cameras went from room to room at Suleman’s home, showing cramped quarters and clutter.
In the video, Suleman says the home is “obviously too small” but has a large backyard where the children can play. She also says she’s looking for a larger home to rent.
“I want the house to be ready, so my whole head is swimming with ideas,” Suleman said in the video.
She has not responded to repeated interview requests from The Associated Press. Her phone has been disconnected and though she said on “Dr. Phil” that she has a publicist, the show only identifies him as “Victor” at his request. Efforts to reach him were unsuccessful.
Copyright 2009 The Associated Press.
More parents ponder cancer gene tests for kids
Date: 9/21/2008 5:48 PM
By MARILYNN MARCHIONE
AP Medical Writer
CHICAGO (AP) _ Women are going for breast cancer gene testing in record numbers, forcing more parents to face a tough question: Should we test the kids?
About 100,000 tests for breast cancer gene mutations were done last year, double the number in 2005. The trend may grow even more because of widening insurance coverage and a new law banning genetic discrimination.
Medical experts advise against such testing before age 25, saying that little can be done to prevent or screen for breast or ovarian cancer until then, so the knowledge would only cause needless worry.
However, new studies and interviews by The Associated Press show that many people who have BRCA gene mutations — and even more of their offspring — disagree. Cornell University freshman Jenna Stoller is one.
“I’m the kind of person that, like my mom, am more comfortable knowing something about myself than not knowing,” said Stoller, who tested positive earlier this year, shortly after her 18th birthday. Her mother made her wait five years after revealing her own positive test result, even though Jenna wanted to be tested at age 13.
“I remember thinking on my 17th birthday that I had another year to wait till I could make the decision for myself,” she said.
Research also shows there can be benefits to at least talking about testing and inherited cancer risks with teens. It led some to quit smoking, one study found. Others, like Stoller, were advised to limit alcohol and avoid birth control pills, which can raise the risk of breast cancer though they also lower the risk of ovarian cancer.
A decade after BRCA testing began, researchers are just starting to discover the many effects that someone’s positive test can have on other family members. A big issue is whether it is ethical or good to test minors.
“I’ve seen a fair number of parents in clinic who have really struggled with this question,” said Dr. Angela Bradbury, a breast cancer specialist at Fox Chase Cancer Center in Philadelphia who has led several studies on the topic.
Myriad Genetics Inc., based in Salt Lake City, sells the only BRCA gene test, which costs up to $3,000.
Men can also carry a BRCA mutation, and if either parent does, a child has a 50-50 chance of inheriting it. The mutations are most common in people of eastern European Jewish descent.
Women with a faulty gene have a three to seven times greater risk of developing breast cancer and a higher risk of ovarian cancer. Men have more risk of prostate, pancreatic and other types of cancer.
To lower risk, women can consider anti-estrogen drugs or having their breasts or ovaries removed. But these drastic measures are not advised for very young women. Even mammograms are not advised till age 25, because cancer is rare before then.
So the American Society of Clinical Oncology and other groups say that when the risk of childhood cancer is low and nothing can be done to lower it, children should not be given gene tests.
“The rule is, do no harm — test only if you can offer something that will help,” said Mary-Claire King, the University of Washington scientist who in 1990 discovered the first breast cancer predisposition gene, BRCA-1.
“The life of a young girl is complicated enough already. There is nothing about it that needs to change” if she carries one of these genes, King said.
But some parents are testing girls before they even have breasts, let alone cancer risk. One woman had her 4-year-old daughter tested, said Sue Friedman, executive director of FORCE: Facing Our Risk of Cancer Empowered, a Tampa-based support group for people with BRCA genes.
Another woman tested two very young children several years ago at Baptist Health South Florida in Miami.
“We wanted to know — it’s as simple as that,” she said. “Kids are born with all kinds of defects that parents have to make decisions about. I just think this is one of those things,” said the woman, who spoke on condition of anonymity because of privacy concerns for her children.
Rae Wruble, a nurse and genetics adviser at Baptist Health, said this woman was the only one in more than 900 she has counseled who chose to test very young children. Wruble said she always tells patients that cancer groups recommend against testing minors and why. But she admitted: “If I had young children, I would have tested them because that’s just the kind of person I am — I would want to know.”
Most parents do not peek inside their child’s gene toolbox, Friedman said. “It does deny the actual patient informed consent.”
“I feel very strongly that people should not test their children, but children should make their own decision,” said Jill Stoller, a New Jersey pediatrician who is the mother of Jenna, the Cornell student.
Jenna had hours of counseling before doctors agreed that for her, testing was the right choice. However, Jennifer Scalia Wilbur, a counselor at Women and Infants Hospital in Providence, R.I., told of a 19-year-old who had testing without counseling and now wants to remove her breasts and not have children.
“It was extremely distressing” to talk with her now and try to correct her overly dire outlook, she said.
At a meeting of the oncology society in June, Bradbury reported on a survey she did of 163 adult BRCA gene carriers in the Chicago area. About half supported testing minors in some or all circumstances. A previous survey she led of 53 gene carriers and 22 of their offspring (ages 18 to 25) found about the same degree of support. Most sons and daughters favored testing minors.
Another of her studies, recently published in the American Journal of Medical Genetics, explored how sons and daughters ages 18 to 25 were affected by learning that a parent had tested positive.
Some effects were good — five of the seven smokers said they were motivated to quit.
Most said the knowledge had no big negative effect, but six of the 22 said they felt frightened or disturbed.
“I was shocked, scared. I wondered if I was going to get the gene and realized I could pass it to my (future) kids. I would feel like it was my fault if they got cancer,” one daughter said in the survey.
Two sons said the knowledge might change their plans to have children. Five daughters and two sons had already gone for gene testing, and nearly all of the rest said they planned to be tested.
Wanting to test minors can be a knee-jerk response that changes after counseling. Tammy LeVasseur of North Attleboro, Mass., at first thought she wanted all three of her daughters to be tested after she learned of her own positive result in July.
She later decided to encourage testing for her two oldest daughters, ages 26 and 28, who had already finished having children, but not for Jessica, who just turned 17.
“I want to wait until I’m in my 20s,” Jessica LeVasseur said. “They wouldn’t do anything about it. There’s no reason to worry now. I’d rather just be able to finish my teenage years without worrying about that.”
___
On the Net:
National Cancer Institute: http://www.cancer.gov/cancertopics/factsheet/risk/brca
FORCE support group: http://www.facingourrisk.org/index.php
Copyright 2008 The Associated Press.
By MARILYNN MARCHIONE
AP Medical Writer
CHICAGO (AP) _ Women are going for breast cancer gene testing in record numbers, forcing more parents to face a tough question: Should we test the kids?
About 100,000 tests for breast cancer gene mutations were done last year, double the number in 2005. The trend may grow even more because of widening insurance coverage and a new law banning genetic discrimination.
Medical experts advise against such testing before age 25, saying that little can be done to prevent or screen for breast or ovarian cancer until then, so the knowledge would only cause needless worry.
However, new studies and interviews by The Associated Press show that many people who have BRCA gene mutations — and even more of their offspring — disagree. Cornell University freshman Jenna Stoller is one.
“I’m the kind of person that, like my mom, am more comfortable knowing something about myself than not knowing,” said Stoller, who tested positive earlier this year, shortly after her 18th birthday. Her mother made her wait five years after revealing her own positive test result, even though Jenna wanted to be tested at age 13.
“I remember thinking on my 17th birthday that I had another year to wait till I could make the decision for myself,” she said.
Research also shows there can be benefits to at least talking about testing and inherited cancer risks with teens. It led some to quit smoking, one study found. Others, like Stoller, were advised to limit alcohol and avoid birth control pills, which can raise the risk of breast cancer though they also lower the risk of ovarian cancer.
A decade after BRCA testing began, researchers are just starting to discover the many effects that someone’s positive test can have on other family members. A big issue is whether it is ethical or good to test minors.
“I’ve seen a fair number of parents in clinic who have really struggled with this question,” said Dr. Angela Bradbury, a breast cancer specialist at Fox Chase Cancer Center in Philadelphia who has led several studies on the topic.
Myriad Genetics Inc., based in Salt Lake City, sells the only BRCA gene test, which costs up to $3,000.
Men can also carry a BRCA mutation, and if either parent does, a child has a 50-50 chance of inheriting it. The mutations are most common in people of eastern European Jewish descent.
Women with a faulty gene have a three to seven times greater risk of developing breast cancer and a higher risk of ovarian cancer. Men have more risk of prostate, pancreatic and other types of cancer.
To lower risk, women can consider anti-estrogen drugs or having their breasts or ovaries removed. But these drastic measures are not advised for very young women. Even mammograms are not advised till age 25, because cancer is rare before then.
So the American Society of Clinical Oncology and other groups say that when the risk of childhood cancer is low and nothing can be done to lower it, children should not be given gene tests.
“The rule is, do no harm — test only if you can offer something that will help,” said Mary-Claire King, the University of Washington scientist who in 1990 discovered the first breast cancer predisposition gene, BRCA-1.
“The life of a young girl is complicated enough already. There is nothing about it that needs to change” if she carries one of these genes, King said.
But some parents are testing girls before they even have breasts, let alone cancer risk. One woman had her 4-year-old daughter tested, said Sue Friedman, executive director of FORCE: Facing Our Risk of Cancer Empowered, a Tampa-based support group for people with BRCA genes.
Another woman tested two very young children several years ago at Baptist Health South Florida in Miami.
“We wanted to know — it’s as simple as that,” she said. “Kids are born with all kinds of defects that parents have to make decisions about. I just think this is one of those things,” said the woman, who spoke on condition of anonymity because of privacy concerns for her children.
Rae Wruble, a nurse and genetics adviser at Baptist Health, said this woman was the only one in more than 900 she has counseled who chose to test very young children. Wruble said she always tells patients that cancer groups recommend against testing minors and why. But she admitted: “If I had young children, I would have tested them because that’s just the kind of person I am — I would want to know.”
Most parents do not peek inside their child’s gene toolbox, Friedman said. “It does deny the actual patient informed consent.”
“I feel very strongly that people should not test their children, but children should make their own decision,” said Jill Stoller, a New Jersey pediatrician who is the mother of Jenna, the Cornell student.
Jenna had hours of counseling before doctors agreed that for her, testing was the right choice. However, Jennifer Scalia Wilbur, a counselor at Women and Infants Hospital in Providence, R.I., told of a 19-year-old who had testing without counseling and now wants to remove her breasts and not have children.
“It was extremely distressing” to talk with her now and try to correct her overly dire outlook, she said.
At a meeting of the oncology society in June, Bradbury reported on a survey she did of 163 adult BRCA gene carriers in the Chicago area. About half supported testing minors in some or all circumstances. A previous survey she led of 53 gene carriers and 22 of their offspring (ages 18 to 25) found about the same degree of support. Most sons and daughters favored testing minors.
Another of her studies, recently published in the American Journal of Medical Genetics, explored how sons and daughters ages 18 to 25 were affected by learning that a parent had tested positive.
Some effects were good — five of the seven smokers said they were motivated to quit.
Most said the knowledge had no big negative effect, but six of the 22 said they felt frightened or disturbed.
“I was shocked, scared. I wondered if I was going to get the gene and realized I could pass it to my (future) kids. I would feel like it was my fault if they got cancer,” one daughter said in the survey.
Two sons said the knowledge might change their plans to have children. Five daughters and two sons had already gone for gene testing, and nearly all of the rest said they planned to be tested.
Wanting to test minors can be a knee-jerk response that changes after counseling. Tammy LeVasseur of North Attleboro, Mass., at first thought she wanted all three of her daughters to be tested after she learned of her own positive result in July.
She later decided to encourage testing for her two oldest daughters, ages 26 and 28, who had already finished having children, but not for Jessica, who just turned 17.
“I want to wait until I’m in my 20s,” Jessica LeVasseur said. “They wouldn’t do anything about it. There’s no reason to worry now. I’d rather just be able to finish my teenage years without worrying about that.”
___
On the Net:
National Cancer Institute: http://www.cancer.gov/cancertopics/factsheet/risk/brca
FORCE support group: http://www.facingourrisk.org/index.php
Copyright 2008 The Associated Press.
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