Several threads by me.
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 Smiths 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 didnt 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 Bernadettes 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 didnt feel right, thats the only way I can express it, she said.
After a long series of questions probing their health, eating habits and family history, the Smiths finally received a diagnosis for Hannah: Trisomy 18. The genetic disorder, also known as Edwards Syndrome, is caused by an extra copy of a chromosome in a persons 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 didnt 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 didnt 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 didnt want to deal with the situation, and had to be convinced to carry on as Hannahs 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 wasnt breathing at first, but Berndattes faith that Hannah would live continued.
The Smiths experience with medical professionals wasnt 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 Hannahs 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 shes 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 didnt 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.
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 As 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 regulations free nationwide prenatal testing program.
Discussions of HHSs 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 HHSs adopting, in its entirety, the Institute of Medicines (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 careand thus prenatal testing for genetic or developmental conditions. The regulation was issued as part of the PPACAs 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 syndromea 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 programsa goal some other countries are now realizing. Indeed, according to the Copenhagen Post, Denmark could be a country without a single citizen with Downs 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 wellbeingcertainly not for the aborted child, but also not for the expecting parents.
Robert Resta, a Genetic Counselor, notes in Augusts 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 mothers 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 IOMs incorporation of such guidelines is the HHSs 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 organizationsthings that could, in fact, improve the parents and childs 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 Rosas Law, a law that replaces mental retardation with intellectual disability in federal publications. Rosas law was named after one of her constituents, who, like Juliet, happens to have Down syndrome. Further, given that HHSs regulation not only encourages prenatal testings discrimination against Down syndrome, but also disrespects a womans 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 medicinean 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 womans 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.
Meet Bernadette and Phil Smith. After giving birth to seven beautiful children, the gift of pregnancy became a natural and normal part of this couples 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 Edwards Syndrome). Its a genetic disorder caused by an extra copy of a chromosome in a persons DNA. Only half of babies diagnosed with the condition survive and have a very poor prognosis in life, so Bernadettes specialist pressured them to pursue only one choice of actionabortion.
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, Hannahs 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 familys 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 Phils first doctor basically said was, Since your baby might die, lets 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 lifeI know many of them personally. But I cant 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 its 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.
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.
Lets be clear: This is not a case in which a doctors 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.
Thread by me.
I watched an old woman die of hunger and thirst. She had Alzheimers, this old woman, and was child-like, trusting, vulnerable, with a childs delight at treats of chocolate and ice cream, and a childs fear and frustration when tired or ill.
I watched her die for six days and nights.
I watched her suffer, and I listened to the medical practitioners, to a son who legally decided her fate, and to an eldest daughter who advised him and told me that the old woman, my mother, was comfortable, except when she was in distress, at which times the nurses medicated her to make her comfortable again.
I watched the old woman develop ulcerations inside her mouth as she became more and more dehydrated; the caregivers assured me these were not painful.
I listened to her breathing become more and more laboured, as her lungs became congested from the morphine administered every three to four hours, and later every hour.
That is what morphine does, you see. It relieves pain, but its cumulative effect is that eventually it shuts down the respiratory system.
No one explained why the old woman was given morphine in the first place, since she was conscious and trying to speak. It is normal that a mild stroke causes temporary inability to swallow, slurred speech, and a severe headache, but all of these are often reversed when the stroke victim is treated and the treatment includes nourishment and water.
The explanation for not giving nourishment and water a feeding tube and IV (intravenous) is that these were extraordinary measures for keeping someone alive.
I watched the old woman day and night for six days. The first night, after the first shot of morphine, her mouth hung open and her tongue started to roll and flutter. At the same time, her jaw trembled continuously.
This went on all night and into the early hours of the morning. Her mouth never closed again, except to clamp tightly on wet cloths placed on her lips. Her eyes were partially closed, but they moved back and forth, back and forth, becoming small slits after seven or eight hours, not closing fully until that long first night was over.
She opened her eyes only once after that, when the nurse was late with the morphine, on the third, or maybe the fourth, day.
The old woman started to moan. Not moaning, said the nurses and the old womans eldest daughter. Just air escaping from the lungs. Not moaning at all.
The old womans eyes started to open, and the air escaping from the lungs sounded exactly like a moan of agony, as the old womans face twisted in horrible contortions. I screamed, Her eyes are opening! Oh, God. Oh, God!
Even as the morphine, quickly injected by a disconcerted nurse, caused the old womans eyes to close and her face to relax, I doubted its efficacy. I thought back to the night before, when I, in tears at the old womans slow dying, had been confronted by a delegation of four of the nursing staff, each of them in turn trying to convince me that the old woman was not suffering in any way at all. The morphine, they said, takes away all pain.
But, I answered them, she can feel: shes squeezing my hand, and if I try to take my hand out of hers, she squeezes tighter, and when I hold a little piece of gauze to her lips, she tries to suck the water out of it. Shes thirsty! This is a horror; this is cruelty!
No, they said. Shes not thirsty. Its just reflex. But, I tell them, I watched her clamp her lips on the gauze so tightly that I had to pull to get it out of her mouth.
She reacts when you touch her feet, her legs, and her hair. If she can feel that she can feel thirst, I plead with them.
Its not the same, they tell me. Shes not in pain.
I look at her. But what if youre wrong? I say. What if youre wrong?
They stand there, saying nothing. Then one looks at the old woman and says, wed better turn her now. She and another care worker go about the business of repositioning the old woman, to keep her comfortable and the other two leave.
The days and nights went in and out of focus. I sat in a chair at the side of the old womans bed, one hand grasped tightly by her hand. I slept an hour or two, here and there, waking always with a start.
Im here, I murmured, so the old woman would know I was keeping the promise I made to her on the first night, after her son and eldest daughter left to get some food, drink, and rest. I promised her then, I will not leave here until you do.
The old woman was fading by the fourth day. Her eldest daughter had been visiting for an hour or so each day, usually mid-morning. This daughter, a former hospital worker, lightly stroked her mothers face and hair and timed the length of her mothers breath apnea, the length of time her mother stopped breathing.
She announced the number of seconds, and then counted the number of breaths between each stopped breath. Seven breaths, she said, 11 breaths.
Sometimes she described the progress of her mothers death, Shes probably down to about 60 pounds now, she pronounced.
Sometimes Im not sure when I noticed it first the nurses asked us to leave while they attended to the old woman. Other times they didnt. Once, perhaps on the fourth day, I told them I didnt have to leave: I had watched them turn her, I had seen her tiny naked body as they gently washed her. I didnt even flinch anymore when they injected the syringe of morphine.
We have to give her a suppository, they said. A suppository? Why?
For anxiety, they said. Anxiety. So that she would appear to die with dignity. The morphine was no longer enough. This courageous old woman, who could face, who had faced, unimaginable hardships with nothing but her faith and her dignity, she could teach you about dignity, I thought to myself.
On the fifth day the eldest daughter visited twice. On her second visit, several staff members entered the room with her. They were all talking loudly, about nothing in particular, except for one care worker, fond of the old woman, who walked over to the bed and called the old womans name loudly enough to interrupt the others light conversation. She examined the old womans hands, lifted the sheet covering her and looked at her legs and feet. She called the old womans name again, and the care workers face showed alarm.
How long has it been? she asked. Shes not even mottling! (Mottling is the term given to describe the blackening of the feet and hands as the body, dehydrating, tries to preserve the vital organs by stopping the flow of blood to the limbs).
You know, continued the care worker, I dont think its her time. Its been, what, five days? If she had been ready to go, shed have gone in 24 hours.The room went quiet. The care worker and I looked at each other. Youre right, I said. The eldest daughter and one of the nurses began to tell her she was wrong, and a nurse hustled her out of the room.
By the sixth night I was not sure I could go on. I slept for an hour or so every four or five hours. I still sat in the chair by her bed, but now I slept with my head on bed, near her stomach.
The old womans breathing was laboured, her will to live defying the system and the foolish young doctor who, on that first night, gave her 24 hours to live, as though he were God Himself.
My heart was breaking for her. I could do nothing to save her, could do nothing but suffer with her. I cried much of the time, but softly, so she would not know. I didnt want to add to her agony.
I had been there six days. She could no longer hold my hand, so I slipped my hand gently under hers. I felt an anguish so profound that I began to wonder if I could survive it.
The old womans breathing was suddenly no longer laboured. Her breath eased from her, and her face oh, her face had become the colour of pearls.
In a split second, the frown that had creased the line between her brows was smoothed away. Her head rested gently to one side. Two care workers entered the room. I saw them in my peripheral vision, but I kept my gaze on the old woman. Were just going to turn her, one of the workers said.
No, I said, my mother is dying.
One of them left to get a nurse, and then the old woman my dear mother, my little, child-like, beautiful mother died.
I put my arms round her, kissed her poor, closed eyes and her now relaxed mouth, and held her limp, tiny body, no more struggling for breath.
I watched an old woman die of hunger and thirst. I watched her die for six days and nights. I watched her suffer, and struggle, and hold onto life.
She had not often found life easy, but she had always found it worthwhile. She was 94 years old. She had been born and had lived all her life in Canada. She had worked hard all her life, married, raised three children, voted, paid taxes, saved enough money to buy her own home, obeyed the laws, donated to charity, done volunteer work, paid her bills, and given much love and brought much joy to many, many people in her 94 years.
In return, in the spring of 2009, her son and her eldest daughter, with the permission and assistance of the law, because this old woman had had a mild stroke, refused her food and water. She could not swallow, so she would have needed the food and water administered artificially.
And the youngest daughter could do nothing except watch her mother die slowly, and write this, in the hope that my mothers death, like her life, will have made a difference.