Several threads by me.
‘Everything they said turned out wrong’: mother of 8 recounts pressure to abort disabled daughter
September 12, 2011 (rtl.org) - Pregnancy was a natural and normal part of life for Bernadette and her husband Phil. After having seven children, the Grandville, Michigan couple thought their family was complete, but the couple received a surprise when they found out they were expecting their eighth child, Hannah.
Though the pregnancy was unexpected, Bernadette and Phil were happy to be blessed with another child. But during the first ultrasound, the routine of another otherwise uneventful pregnancy was replaced with anxiety after the surprised sonographer left the room to consult with a doctor.
“What I see is not good,” the doctor told the Smith’s after looking at the screen.
Bernadette said the doctor needed her to make an appointment with a specialist to see what the problem was, but he didn’t give them any details. While parents are not prepared to hear a troubling diagnosis for their child, Bernadette and Phil were even more unprepared for how differently this pregnancy would be treated than the first seven.
The building that housed the specialist was the first sign of trouble in Bernadette’s eyes. She said she clearly remembers how obscure the office building looked as they walked in, and said she felt very unsettled from the beginning.
“It didn’t feel right, that’s the only way I can express it,” she said.
After a long series of questions probing their health, eating habits and family history, the Smith’s finally received a diagnosis for Hannah: Trisomy 18. The genetic disorder, also known as Edward’s Syndrome, is caused by an extra copy of a chromosome in a person’s DNA. The disorder can cause several types of birth defects, and according to the National Institutes of Health, only half of unborn babies diagnosed survive the birth process, and those who do survive have an extremely poor prognosis.
Bernadette said the specialist told her that Hannah had a grim outlook and would either die during the pregnancy or would die shortly after birth. The specialist told the couple bluntly that they had a “choice” to make. Bernadette said that though the specialist didn’t mention it, everyone in the room knew that “choice” meant abortion. Phil said very clearly that they would not abort their child, but that was not good enough for the specialist.
“Then the specialist said to just me, ignoring Phil, ‘You have a choice to make,’” Bernadette said.
Fortunately for Hannah, Bernadette and Phil both strongly believed in the right to life for all unborn children. Being firm in their convictions didn’t make it any easier, however, when the specialist continued to badger them about making a “choice.” Bernadette said the doctor told her that with seven children who needed her it would be wrong for her to be spending time in the hospital dealing with a miscarriage.
“Fear tried to grip me, but I did not receive those words,” she said. “I heard a voice say ‘you can choose to fight.’”
Bernadette said she continued to feel embattled by medical professionals throughout and after the pregnancy. She said even her obstetrician seemed like he didn’t want to deal with the situation, and had to be convinced to carry on as Hannah’s doctor. Bernadette developed a constant refrain, “she will live,” to counter all of the negativity.
“These were dark, dark trying times for me,” Bernadette said.
Despite the prognosis and pessimism, Hannah was born on June 19, 2007. Doctors had said Hannah would likely die before birth, but she was born a week late during a caesarean section. Hannah wasn’t breathing at first, but Berndatte’s faith that Hannah would live continued.
The Smith’s experience with medical professionals wasn’t completely sour. As Hannah was lying in intensive care, the hospital was very reluctant to let them take her home. Fortunately, Bernadette was able to befriend some nurses and even led Bible studies with them while recovering in the hospital from the birth. One nurse in particular promised Bernadette she would help her bring Hannah home. She also received support from her own doctor after Hannah was born.
“Our family doctor was good through it all, he was the encourager,” she said.
Years after the birth, Bernadette ran into one of her former nurses. She said the nurse was very tender, thinking all the predictions of Hannah’s fate had come true, but was shocked to discover how it turned out. Now, four years later, Hannah is a joy and constantly laughing, Bernadette said. Hannah has had several problems, including a hole in her heart that eventually healed and difficulty walking and talking on her own, but she’s a smart little girl who is most definitely alive.
“Everything they said turned out wrong,” she said. “What if I had an abortion?”
Bernadette said she thinks the doctors who were being pessimistic throughout the pregnancy thought they were trying to help. She said they refused to believe that Hannah had any hope, and thought a child with disabilities was too much for her family to handle despite their faith that God would see them and Hannah through.
“They were not happy with me because I didn’t do what they wanted me to do,” she said. “They thought I was in denial.”
Bernadette is emphatic in her desire to help others facing crisis pregnancies, and is working on a book to tell her full story. She said the most important thing for people facing a troubling prenatal diagnosis is to not listen to those preaching doom, and to never give up hope or faith in God.
“Your baby can make it, your baby can live,” she said. “Do not give this baby over to death.”
___________________________________________________
Obama Admin Targets Down Syndrome Babies Under Obamacare
Prenatal testing for Down syndrome should not be considered preventive medicine. Such tests cannot prevent the presence of Down syndrome in a child; but they can decrease the likelihood of a child with Down syndrome surviving beyond the womb. Expectant parents need accurate information, including the many positive outcomes, about life raising a child with Down syndrome.
Last month, my daughter Juliet began second grade, where her mother and I expect her to maintain her B+ average on spelling tests and straight A’s in Chinese. In addition to being a loving daughter and big sister, Juliet also is endowed with Down syndrome. At the start of the month, the Department for Health and Human Services (HHS) announced that future births of children like Juliet should be prevented. Down syndrome is the most common genetic cause of intellectual disability and, as such, will be targeted in the new HHS regulation’s free nationwide prenatal testing program.
Discussions of HHS’s new regulation have focused on the required availability of free contraceptive services under the Patient Protection and Affordable Care Act (PPACA). The regulation is the result of HHS’s adopting, in its entirety, the Institute of Medicine’s (IOM) report on Clinical Preventive Services for Women. Buried in the IOM report is the recommendation for no-cost well-woman visits; these visits include prenatal care–and thus prenatal testing for “genetic or developmental conditions.” The regulation was issued as part of the PPACA’s coverage of preventive services. This prompts the question, how does prenatal testing prevent Down syndrome?
The IOM report defines preventive services “to be measures . . . shown to improve wellbeing, and/or decrease the likelihood or delay the onset of targeted disease or condition.” Down syndrome occurs at conception. Prenatal testing simply identifies whether a pregnancy is positive for Down syndrome–a prenatal diagnosis after which most women choose to terminate their pregnancy. A prenatal test does not decrease the likelihood of Down syndrome in a person; it does allow for a decreased likelihood of a person with Down syndrome surviving beyond the womb. If this is how HHS is justifying prenatal testing for Down syndrome as preventive care, then HHS has ushered in a program meant to target future children like Juliet.
The targeted elimination of people with Down syndrome is, in fact, the goal of other countries that have adopted nationwide prenatal testing programs–a goal some other countries are now realizing. Indeed, according to the Copenhagen Post, Denmark “could be a country without a single citizen with Down’s syndrome in the not too distant future,” due to its nationwide prenatal screening program, in place since 2004.
Perhaps the HHS is not purposefully trying to sneak in a modern-day eugenics program to eliminate Down syndrome by regulation. It is likely that the IOM report relied on professional guidelines that recommend the offering of prenatal testing for Down syndrome. Actual experience, however, has shown that such tests do not “improve wellbeing”–certainly not for the aborted child, but also not for the expecting parents.
Robert Resta, a Genetic Counselor, notes in August’s American Journal of Medical Genetics that “there is very little empirical evidence that prenatal knowledge improves medical, developmental, emotional, or adaptational outcomes.” Further, studies have found that prenatal testing increases the mother’s anxiety, regardless of the test results; that women often do not make informed decisions about accepting prenatal testing or decisions made after a diagnosis and that, when abortion is the chosen response, a significant number of women experience post-traumatic stress.
The lone dissent to the IOM report by a committee member makes the point that clinical guidelines “were never intended to provide a basis for insurance coverage determinations; they are intended as guides to physician practices.” Yet, if the IOM’s incorporation of such guidelines is the HHS’s justification for covering prenatal testing, then why does HHS not provide for the other information required to accompany prenatal testing?
The IOM report states that informed decision-making “is structured to give an individual all the information needed to choose from among different clinical options, such as whether to undergo genetic testing.” Professional guidelines require that physicians be well-informed about Down syndrome, offer accurate information, and recognize that parent support organizations can be very helpful. This summer, the National Society for Genetic Counselors and the American Academy of Pediatrics required that this balancing information be part of prenatal care. Both further note that families “benefit from hearing a fair and balanced perspective, including the many positive outcomes of children with Down syndrome and their effect on the family.”
The need for this information is so apparent that, in 2005, two senators from opposite sides of the abortion issue, Senators Ted Kennedy and Sam Brownback, co-sponsored legislation that recognized the need to provide accurate, balanced information and support by parent organizations. In 2008, the Prenatally and Postnatally Diagnosed Conditions Awareness Act was signed into law, but it has yet to receive any appropriations. Similarly, the HHS regulation only requires coverage of the testing itself, but says nothing about covering the provision of proper training, accurate written materials, or support to or through parent organizations–things that could, in fact, improve the parents’ and child’s wellbeing after receiving a prenatal diagnosis.
It seems hard to believe that Congress and the President meant for the PPACA to institute a national prenatal screening program that targets Down syndrome and also fails to provide all of the required information to expectant mothers. Sen. Mikulski introduced the provision for preventive services for women, yet she was also the lead sponsor of Rosa’s Law, a law that replaces “mental retardation” with “intellectual disability” in federal publications. Rosa’s law was named after one of her constituents, who, like Juliet, happens to have Down syndrome. Further, given that HHS’s regulation not only encourages prenatal testing’s discrimination against Down syndrome, but also disrespects a woman’s exercise of informed choice, it is unlikely that members of the bipartisan Congressional Down Syndrome Caucus would allow the regulation to remain in effect.
Prenatal testing for Down syndrome should not be labeled as preventive medicine–an inaccurate and misleading description of a procedure that may prevent Down syndrome births, but certainly does not prevent Down syndrome. A regulation should not be allowed to target a portion of our society for elimination without public debate by accountable elected officials. If the regulation is to remain in place, then additional funding should be provided for all the information required to respect a woman’s choice following a prenatal diagnosis. The President and the Congress should see that the new HHS requirements for preventive care expressly exclude coverage of prenatal testing for Down syndrome unless and until there is public debate and balanced funding for the needed resources.
You can help them do that by leaving a comment on this new regulation here.
___________________________________________________
The Little Baby Who Can: Rejecting Abortion in Trisomy 18
Meet Bernadette and Phil Smith. After giving birth to seven beautiful children, the gift of pregnancy became a natural and normal part of this couple’s life.
Just when they thought their family complete, an eighth child came as an unexpected surprise. Hearing the news, the Smiths eagerly looked forward to the wonderful opportunity of welcoming another precious little one into their family.
Then came some disturbing news. According to their doctor, there was a problem with the pregnancy and Bernadette would need to see a “specialist” to explore the specifics. But the information was vague, so Bernadette and Phil were unprepared for the possibility that this pregnancy was going to be very different.
After the specialist questioned them about their health, eating habits and family history, the Smiths received news that forever changed their world. Their little baby had Trisomy 18 (otherwise known as Edward’s Syndrome). It’s a genetic disorder caused by an extra copy of a chromosome in a person’s DNA. Only half of babies diagnosed with the condition survive and have a very poor prognosis in life, so Bernadette’s “specialist” pressured them to pursue only one “choice” of action—abortion.
Cherishing the lives of each and every one of their children, Bernadette and Phil went through with the pregnancy. Their little one, whom they named Hannah, was born on June 19, 2007.
Four years later, Hannah’s story of overcoming health complications has shocked the former nurses and doctors who said the odds were stacked against her. Bernadette is now passionate about helping others face crisis pregnancies, and is even writing a book to tell about the experience of giving birth to Hannah.
The Smith family’s experience is just one example out of countless others that show many doctors think the initials MD after their name stand for “Medical Deity.” What Bernadette and Phil’s first doctor basically said was, “Since your baby might die, let’s kill her by abortion to make sure she dies.” Just stop and think of how barbaric this so-called “professional advice” is. They present intentional killing as a good and caring thing to do.
Not all doctors have betrayed the trust of their patients. There are lots of good physicians dedicated to healing and preserving life—I know many of them personally. But I can’t begin to tell you how many mothers and fathers have relayed similar advice by physicians like that given to Bernadette and Phil. This is why 90% of babies diagnosed with Down syndrome in the womb are aborted. What these so-called medical professionals ignore is that all life has been given by the Creator, and it’s wrong to intentionally take their lives.
Please join me in speaking up for them when you have the opportunity. More babies will die if we remain silent.
___________________________________________________
Wesley J. Smith: Jury Agrees Boy Has a “Wrongful Life”
Shame on the jury who, in effect, agreed that a now happy child born with disabilities would be better off dead via abortion. From the Palm Beach Post story:
During a roughly two-week-long trial that ended Wednesday, Mejia and Santana claimed they would have never have brought Bryan into the world had they known about his horrific disabilities. Had Morel and technicians at OB/GYN Specialists of the Palm Beaches and Perinatal Specialists of the Palm Beaches properly administered two ultrasounds and seen he was missing three limbs, the West Palm Beach couple said they would have terminated the pregnancy. Instead, they went to the hospital in October 2008, believing they would have a healthy son. “They went from the heights of joyous expectations to the depths of despair,” their attorney Robert Bergin told the jury during closing arguments Wednesday.
Let’s be clear: This is not a case in which a doctor’s negligence caused the disability, in which case an award would be proper. Rather, it is a case in which a doctor failed to catch an already existing problem, the knowledge of which, the parents say, would have caused them to eugenically abort. As such, it is a “wrongful life” case, which should be rejected as public policy out of hand.
Let us hope this boy never finds out that his parents would have prevented him from being born.
Disability rights advocates should be very alarmed. Nay, we all should be. There is no such thing as a “wrongful life.”