Prenatal Testing and Babies with Disabilities
Prenatal Testing and Babies with Disabilities
Prenatal tests – are they a useful tool to help parents and babies? Or, are they a means to search for and destroy babies with disabilities in the womb?
The answer is yes to both. Unfortunately, the “search and destroy” use is most prevalent today, and challenges you to think about the meaning and worth of people with disabilities. If parents want a baby, but not a baby who isn’t “perfect,” the result is clearly discrimination.
Western culture is driven towards the ideal – towards perfection. We live in a society that worships physical beauty, applauds academic and economic achievement, and strives to attain the “good life.”
Often, people in pursuit of perfection recoil at the sight of physical disfigurement. They sometimes voice outrage at allowing the birth of “defectives,” questioning their ability to contribute to society in any meaningful way. Yet, a person with a disability is a human being with gifts, abilities, potential, and feelings.
Most babies diagnosed with disabilities before birth are being aborted instead of given a chance at life. Societal pressure to destroy such an imperfect life is enormous. Yet, babies with disabilities need to enjoy the same privileged right to life that you do.
Pressure to Abort a Special Needs Baby
Doctors feel obligated to offer prenatal tests out of fear they will be successfully sued for the “wrongful” birth of a child with a disability. If you have had a prenatal test and been told that your baby has special needs, you may feel pressure from medical staff and/or family members to end the child’s life through abortion.
You are probably emotionally upset and frightened for your future and that of your child. It is important to focus on the fact that this is your child, perfect or not. There are numbers of support systems available for your family both before and after birth. There are people willing to adopt your child if you feel unable to take care of him.
Remember that prenatal tests are not always accurate, and your baby’s prognosis as explained by the medical team may be overly grim. As hard as it seems, staying positive and optimistic will assist you greatly.
If your medical team does not support your having your baby, you may have to seek a new team. Be prepared to respond positively to negative attitudes towards your child. You could say to family or friends:
“The doctors have told us that our baby may have some problems but we’re going to wait and see. We won’t know for sure until the baby is born.”
The following tests can be conducted during pregnancy:
Amniocentesis: Most common prenatal test which is done around 15 to 20 weeks 1 into the pregnancy. A sample of amniotic fluid is extracted from the mother’s womb and the fetal cells are tested for abnormalities. A 0.5 % miscarriage rate is associated with amniocentesis.2
Chorionic Villus Sampling (CVS): Conducted early in pregnancy, usually from 10 to 13 weeks. Some of the chorionic villi cells are taken from the placenta at the point where it attaches to the uterine wall, 3 and fetal cells are tested for abnormalities. There is no consensus of what the miscarriage rate from CVS is. Some reports show it to be the same as that for amniocentesis and some to be twice that of amniocentesis. “There appears to be an even higher risk of miscarriage with the transcervical CVS technique compared to the transabdominal technique. Other factors that further increase the risk of CVS include having the procedure three or more times and having a fetus that is smaller than normal for their age. The physician's skill and experience also play an important role.” 4 CVS is also associated with the birth of babies with limb abnormalities, especially when CVS is performed before the 10th week of pregnancy.5
Alpha-fetoprotein Test (AFP): Conducted between 15 to 20 weeks into pregnancy.6 Blood sample is taken from the mother. This test is unreliable and associated with high false negative results, meaning that an abnormality is detected when none exists.
Ultrasonography: Conducted at any time during pregnancy. An ultrasound picture assists in detecting visible abnormalities of organs and limbs.
Combination of Tests: Conducted to verify or substantiate results of other tests.
More prenatal technologies become available each year to test for certain diseases that an unborn child might have.
Conditions Detected in Utero
It is now possible to diagnose approximately 450 conditions in utero by testing fetal cells. This number could skyrocket to almost 6,000 conditions in the future. 7
The most common victim of abortion following prenatal testing is the child with Down syndrome which affects one in 800 to 1,000 births.8Down syndrome is most often associated with women who become pregnant at an older age. For women in the 20-24 age group the occurrence of Down syndrome is one in 1,490 births, for women over 40 it is one in 60, and for age 49, it is one in 11 births.9
Although probability increases with maternal age, 80% of children with Down syndrome are born to women under the age of 35, reflecting the overall fertility of that age group. 10
Although not considered a severe disability, 81 - 91% of Down syndrome children detected prenatally have their lives ended by abortion. 11,12,13,14
The second most common abnormality is the presence of a neural tube defect (NTD) which is “any defect of the brain and spinal cord caused by failure of the neural tube to close during growth during pregnancy….” The incidence of NTD is the highest in Appalachia with one case in 1,000 births. Worldwide, the incidence of NTDs is 0.6 – 1.3 cases of 1,000 births.15 Approximately 2,500 infants with NTDs are born in the United States each year.
Neural tube defects cause conditions known as spina bifida (open spine), anencephaly (lack of brain formation), and encephalocele (an abnormal closure of the spinal column). Anencephaly is a condition incompatible with life, and these infants usually die within a few hours or days.
Typically, spina bifida - the most common disabling birth defect 16 - is accompanied by hydrocephalus (fluid on the brain) in 70% to 90% of infants.17 Intellect of children with spina bifida can range from profound retardation to high intelligence, although few have profound retardation.
Around 1993, an exciting medical finding concluded that folic acid, a simple, widely available water-soluble vitamin, can prevent spina bifida and anencephaly. The U.S. Public Health Service recommends that all women who could possibly become pregnant get 400 micrograms (or 0.4 mg) of folic acid every day. This could prevent up to 70% of some types of serious birth defects. But to do this, women need to take folic acid before they get pregnant. 18
Prenatal tests also indicate the sex of a child. Although not reported in significant numbers, a certain number of women abort a child of the undesired sex. In India, there are reports of numbers of girl babies aborted because they are the wrong sex.
The overall rate of abortion when an abnormality is detected in the child is at least 73%, with some authorities placing the rate between 80% and 100%. 19
Tests are routinely conducted on living human embryos conceived through in vitro fertilization. Embryos with genetic defects are destroyed or not implanted in the mother.
In Utero Treatments
There is a bright side to prenatal testing with the advent of in utero treatments for unborn babies. The baby is rightly treated as a second patient. Microsurgery on the spine of a baby with spina bifida can be conducted in utero to correct a defect or limit the impact of the defect.
In 1999, Samuel Armas jolted the surgeon performing surgery on him in utero when little Samuel reached out of the womb and grabbed the surgeon’s finger.
In addition to in utero surgery for spina bifida, surgery can also be done for heart defects, facial defects, and Amniotic Band Syndrome (a set of congenital birth defects believed to be caused by entrapment of fetal parts [usually a limb or digits] in fibrous amniotic bands in utero.]
Should You Have a Prenatal Test?
Because of fear of a “wrongful” birth lawsuit, your doctor is most likely to recommend prenatal tests at some time during your pregnancy. Ultrasound testing is done routinely during pregnancy to assist your doctor in caring for you and your child.
So, the question arises – should you have a prenatal test? And what will you do with the information? Unfortunately, in utero treatments are not available for most detected problems. If you have no desire to abort your baby, you should decline tests for the following reasons:
- Some tests have the complication of miscarriage, even if there is nothing wrong with the baby.
- The diagnosis may be wrong.
- The abnormality may not be as severe as the diagnosis suggests.
- Even if a child is afflicted with a condition that limits his life or potential, the child has the right to his own life.
And, aborting a child, even one with health problems, may cause significant psychological problems for the mother.
Where to Find Help
Unquestionably, society must be concerned about the additional stress placed on a family caring for a child with a disability. We must be committed to providing services which not only assist the family but also offer opportunities for the child to reach her full potential. Fortunately, many of these programs now exist.
- Educational programs geared to the needs of individuals with disabilities.
- Birth-to-Three intervention programs whose goal is to enhance the development of the child in the earliest years when results are most beneficial.
- Vocational and transition programs to train those with disabilities.
- Assistive technology which perfects technological devices, such as computers and voice boxes, to assist specific disabilities.
- Independent living programs to allow persons with disabilities to live in the community.
- Codes requiring public places to provide access for people in wheelchairs.
- Special needs adoption programs.
Not only are there ethical questions about killing unborn children, but the technology of prenatal testing raises additional questions regarding whether or not having a baby is analogous to buying a car. There is widespread support for supporting abortion if a serious genetic defect is identified during pregnancy. "70 percent of Americans said they believe that women should be able to obtain a legal abortion if there is a strong chance of a serious defect in the baby according to a 2006 poll conducted by the National Opinion Research Center." 20 This raises the specter of a eugenics society which regards the perfection of the person as more important than the existence of the person.
Personal Stories – We Made the Right Decision
In 1995, my daughter, Cameron, was born with a genetic disorder known as trisomy 13.From the day she was born we knew that she wouldn't live long. She spent her first 10 days in the hospital and then came home to live with us - myself, my husband, a sister and a brother.
During her hospital stay, we had a different neonatologist nearly every day. And the interesting thing was that none of the doctors could really answer our most pressing question, "How long will she live?" Trisomy 13 babies can live for minutes, hours, days, months and, rarely, years. Cameron lived for seven weeks.
At the time I gave birth to Cameron I was considered advanced maternal age. I was 36. The only testing we opted for was a general ultrasound that wasn't designed to pick up abnormalities like Trisomy 13. We chose not to do any invasive testing because we knew abortion was not something we would choose. And now I know that if we would have found out about Cameron's condition, we would have faced the question, "How long will she live?" with as much medical uncertainty as we faced when she was born. Each person is different. No one can predict their life span, the quality of their life, what a disability means to that person.
We were fortunate. Cameron lived well until her last week of life before things like oxygen and medications became necessary.
Those seven short weeks have changed my and my family's lives forever. And how glad we all are for that. You see, her little life made a deep impression. We had seven weeks to hold her, love her and get to know her - as did our extended family and friends. How glad we are that we didn't cut her little life any shorter than it was.
I had a friend who asked me after Cameron died if it wouldn't have been better not to have had her at all. My response was and is - absolutely not. The pain we faced was offset by the love we gave and got from Cameron's little life. And what would I have told my other children? If a life isn't perfect, it doesn't matter? If a person isn't complete, they shouldn't have the right to live?
They were seven and four at the time. They knew Cameron was sick but they didn't care. They held her and loved her and are now telling their two little brothers (age four and almost two) about their sister that someday they'll meet. What has helped us so much is that people knew our daughter. The fact is that she was, and still is, acknowledged as a member of our family.
About four weeks before our last baby was born, we learned that he would not live because his brain had not developed properly. He was diagnosed as having anencephaly. It was devastating news for us.
We cried and we prayed. I did not know how I could go through a birth and a death all in the same 24 hours. It was a difficult time. Even after being told it was not possible for our little one to live, I continued to hope and pray that the doctors were wrong. I prayed that the baby that seemed to be so full of life within me would not die.
The delivery I had feared because it would be breech, went well and was considerably easier than some I had experienced. Our little Joseph was born on March 22, 1983. My husband baptized him and I held him. I unwrapped the little blanket that held him and found that he was perfectly formed from the neck down. I did not hold him for very long because he lived only an hour and a half. We buried him in a little coffin in the children's section of the cemetery and, later, with all of our family present, we had a memorial Mass said for him. It is such a sad event to lose a child. He would have been 24 [in 2007].
It was weeks before I realized how emotionally draining the experience was - and what a vulnerable state I had been in. How grateful I am that I had a doctor who never mentioned the word abortion. I am so glad that my child was able to live as long as he did, that we were able to baptize him and hold him. Thank God I was not encouraged to end his life in a painful way. I believe in the sanctity of each human life, but if I had been pressured to have an abortion at that time, given the emotional state I was in, I am not sure what I would have done - what an awful memory that would be.
I believe women can face difficult situations and give birth to their babies - they just need support and encouragement. It is my hope that all of our doctors will recognize the dignity of all of their patients, including the unborn.
Referenced on website, 9/14/07
Also see note 1.
Referenced on website, 9/14/07.
7. Fr. Tadeusz Pacholczyk, “Genetic Tests: Conspiracy of
Eugenics?” The Compass, August 17, 2007.
8. Based on estimates by the National Institutes of Health-
Human Development-Down syndrome rates. Retrieved on
9. Center for Disease Control (6Jan. 2006). “Improved
National Prevalence Estimates for 18 Selected Major Birth
Defects, United States, 1999-2001.” Morbidity and
Mortality Weekly Report 54 (52& 53): 1301 – 1305.
10. Estimates from the National Down Syndrome Center, Retrieved on 2006-04-21.
11. Forrester MB, Merz RD. 1999. Prenatal diagnosis and elective termination of Down syndrome in a racially mixed population in Hawaii, 1987-1996. Prenat Diagn 19(2): 136-41.
12. Kramer RL, Jarve RK, Yaron Y, Johnson MP, Laminen J., Kapserski SB, Evans MI. 1998. Determinants of parental decisions after the prenatal diagnosis of Down syndrome. Am J Med Genet 79:172-174
13. Caruso, TM, Westgate MN, Homes LB. 1998. Impact of prenatal screening on the birth status of fetuses with Down syndrome at an urban hospital, 1972 – 1994. Genet Med 1(1): 22-8.
14. Wertz, DC. 1997. The Impact of Prenatal Diagnosis on Down Syndrome, Anencephaly and Spina Bifida. GeneSage, Gene Letter.
17. Rekate, Harold L., M.D., Comprehnsive Management of Spina Bifida, 1991. Intro.
19. Vincent et al., Southern Medical Journal, October 1991, Volume 84, Number 10, Table 1.
20. Amy Harmon, “Genetic Testing + Abortion = ???”, The New York Times on the web, 5.14.07.