TESTS AND TERMINATIONS

 

God never shuts one door but he opens another. -- Irish Proverb

 

REMEMBERING TANNER

 

I’m sitting here remembering your beautiful face

And longing to hold you once more.

My love for you will never cease

It’s you that I’ll always adore.

 

My child, please know that I miss you so much

And the pain inside me still grows.

Our time together was way too short

The reason, only the good Lord knows.

 

I know that you’re now in Paradise

And yes, that brings me great joy.

But I’m your mom and it’s hard to let go

Because you still are my little boy.

 

So pray for me, son, for my heart to mend

For it always will be filled with sorrow.

Time does not diminish my love for you

I’ll miss you yesterday, today, and tomorrow.

 

By Renee Pierson

Tanner’s Mom

 

Prenatal testing is both a blessing and a burden.  A blessing because knowing that your baby has difficulties can help you plan ahead.  A burden because knowing about your baby brings with it pressure to "decide." 

 

WHY SCREEN ALL PREGNANT WOMEN?

 

The Genetics Center, which offers "straightforward answers to common questions" via the internet, has this question and answer:

 

Why screen all pregnant women?

 

During a pregnancy, every couple is concerned about whether their baby will be healthy. Fortunately, over 95 percent of babies will not have any significant health or learning problems. Two relatively common disorders, Down syndrome and spina bifida, most often occur where there is no family history of these disorders. Since they are both serious conditions that can be prenatally diagnosed in the early stages of pregnancy, screening can be very helpful for any pregnant woman.

 

The site goes on to discuss what will happen if the test results are abnormal.

 

If an abnormal screening result is obtained, a couple may be asked to consult a geneticist, who will obtain a detailed family and pregnancy history, review the results of the screening tests, and help the couple and the obstetrician decide how to proceed with further testing.

 

The information sounds innocuous.  However, an "abnormal screening result" may prompt a doctor or geneticist to advocate pregnancy termination.

 

 

Based on the level two ultrasound, the doctor felt certain that our baby had Trisomy.  He was insistent that I have an amnio to confirm the diagnosis.  At first I resisted due to the risks involved with amniocentesis, but the doctor pushed me to have it done, to definitively rule out Trisomy.  I was sent to a genetic counselor who told us all the horrible things Trisomy babies deal with.  He strongly encouraged us to terminate.  Even if the baby lived, he would have all these complications.  When we told him he would not terminate, he said that they could not help us and we were on our own. (Sandy, mom of Casey who was born with Trisomy 18)

 

The perinatologist, who was somewhat sympathetic, asked us, "What did we want to do?" and offered her help.  A bit confused, I asked her what she meant.  Well, of course, "Did we want to terminate?"  (Doreen, mom of Gianna who was born with Trisomy 13)

 

The attending physician sent us to the genetics counselor.  The counselor emphasized how horrible and fatal the condition was.  We told her that termination was not an options.   I asked her if she had any support for me. She said she would get back to me and give me the name of someone who had a child like this.  I am still waiting.  (Christine, mom of Grace Ann who was born with Trisomy 18)

 

Every single one of the doctors came up with same diagnosis of Potter's Syndrome and they all recommended that we terminate the pregnancy.  (Donna, mom of Jonathan who was born with Potter's Syndrome)

 

Certain tests are accurate only if the exact time of conception is known.

 

Michael researched the triple screening test and learned that the results were only accurate if the blood test is given knowing the actual weeks of gestation.  There was no way my doctor knew the actual gestation of our baby.  Yet she informed me in a very matter of fact way that we had a problem. I think of parents who rely on the results of the triple blood screen tests and trust their doctor's advice to consider aborting their baby. They don't realize that the tests are reliable for detecting healthy babies but unreliable for detecting abnormalities. Too many women have relied on the test results and aborted what they thought was a baby with an abnormality only to learn afterwards that the baby did not have any abnormality. Not to mention that the message being sent to society is that disabled people should be eliminated and that parents should be spared from raising these children. Why can't we just accept people the way they are, with their differences? (Lisa, mom of Brady who was born without any disability)

 

ADDITIONAL TESTS

 

If first tests indicate a problem, doctors will schedule additional tests.  Some mothers refuse these.

 

My doctor said there was a problem with the baby's bowel.  He wanted me to undergo an anmiocentesis and I refused.  It became a battle of the wills.  If I had the amnio, the doctors would have discovered Joey's Trisomy 18 and they would have pressured me to abort. I wanted to avoid that pressure.  (Erin, mom of Joey who was born with Trisomy 18)

 

I remember refusing the alpha-feto-protein test, saying, "No.  That would just give me one more thing to worry about." The nurse kept pushing the test at us.  Finally, my husband blurted out our religious beliefs and said we wouldn't terminate even if something was wrong with our child. The nurse then said, "Oh, so you'll take whatever God sends you?" and we said "Yeah," then left, a little annoyed. (Jewell, mom of Joyann who was born with anencphaly)

 

By 7 months, I had preeclampsia. The baby was measuring small. The following month the doctor sent me to a geneticist.   The geneticist suspected Trisomy 18.  I was 30 weeks pregnant.  My doctor began to monitor Maria with a continuous sonogram and to treat my preeclampsia with bed rest.    The geneticist informed me of the perils of Trisomy 18. She and my OB were persistent in trying to persuade me to have amniocentesis to positively identify the baby's genetic disorder. It was suggested to me that positive identification would lead to induction of labor and subsequent birth.  I knew this would kill her.  Since I had recently re-read the Holy Father's encyclical on the vocation and dignity of women, the significance of the dignity of the human person was fresh in my mind.. To allow them to determine the diagnosis of Trisomy 18 positively would be a direct assault against the baby's dignity as a person.  My husband and I chose to make the doctors go blind--to treat me for preeclampsia and allow God to bring Maria to birth in His time. (Jeanne, mom of Maria G. who was born with Trisomy 18)

 

Amniocentesis comes with a risk of miscarriage.  Some parents do not want to take that risk.

 

As for Emmil, we didn't know through the whole pregnancy whether or not he had Down syndrome.  We did NOT get any further testing.  The doctor told me to get the test just so I would know for sure to alleviate stress. I knew that there was a risk of miscarriage and I wasn't about to risk that AT ALL  (Ashli, mom of Emmil who was born without Down syndrome)

 

Doctors often assume that parents choose follow up tests in order to terminate if a serious problem is confirmed.

 

As no therapeutic intervention yet exists to cure D(own) S(yndrome) (Author's Note:  or most other prenatally diagnosed conditions) or ameliorate some of its manifestations in utero, prenatal screening and diagnosing have almost exclusively existed to allow women the option of terminating their pregnancies. Knowing this, health care providers have historically operated under the assumption that if a woman consents to prenatal screening or diagnosing, she must believe that having a child with DS (Author's Note: or other prenatally diagnosed condition) would be an undesired outcome and wish to terminate her pregnancy if such a diagnosis were made prenatally.  The results of this study indicate that this is not true for all women.  Consequently, health care providers should appreciate that many women consent to prenatal testing with ambivalence or no intent whatsoever to terminate.[1]

 

My husband and I thought our son had Down syndrome because of what a perinatologist told us at a 20-week appointment. The nuchal fold was chubby, and he said that only 1% of the children he saw with our son's measurement DIDN'T have DS.  meaning 99% did. "Go ahead and get an amnio today so you can take care of it as soon as possible," he said. I think he was a little disappointed when I told him I'd let him take my arms and legs before I'd let him take my child.  (Ashli, mom of Emmil who was born without Down syndrome)

 

HOW INFORMATION IS PRESENTED

 

We generally trust the medical community to present factual, unbiased information.  However, the presenter's personal bias may color the way information is presented.

 

"There's definitely a feeling out there that a life like this is not worth pursuing to the end of the pregnancy.    I don't know how we've come to this end, but we have. A large portion of the obstetrics community believes these lives are less worthy, in the sense that babies that appear to be normal are, in a sense, more worthy. . . . You can speculate on the reasons as much as I can.  Is it abortion on demand?  Even the March of Dimes; healthy baby program -- the March of Dimes does a tremendous amount of good work. But the promotion is based on identifying and eliminating unhealthy babies.  Somewhere, we have developed a definition of healthy and, in pursuit of 'healthy,' there are babies deemed unhealthy. Their moms are strongly steered toward termination."  (Dr. John Wagner, "Witness to Love:  The Short, Beautiful and Inspiring Life of Grace Ann Nugent,"  5-11 January 2003, p. 17)

 

I anxiously asked him what the treatment was, and he matter-of-factly said, “There is no treatment; you must terminate.”  My doctor made an appointment for a more detailed sonogram.   The radiologist also recommended that we terminate.   We saw several other specialists, including perinatologists.  Every single one came up with the same diagnosis of Potter’s Syndrome and they all recommended that we terminate the pregnancy. (Donna, mom of Jonathan who was born with Potter's Syndrome)

 

"Termination of pregnancy has become the de facto management of choice for lethal fetal conditions, and health care providers as a group may be more favorably disposed to this method of management than either the general public or pregnant woman herself.  Others have speculated, and our own experience has suggested, that if a specific model of prenatal care for these patients is instituted and explicitly presented as an option, the number of patients choosing this form of management may increase.  Therefore, some providers may question the wisdom of committing resources to an approach possibly encouraging what they perceive as a 'less than optimal' parental choice."( Dr. Nathan J. Hoeldtke and Dr. Byron C. Calhoun, "Perinatal Hospice," American Journal of Obstetrics and Gynecology, September 2001, p. 528),

 

In simpler words, most of the medical community believes that the best way to deal with "lethal fetal conditions" is termination of the pregnancy.  The same might be said for other conditions which are not fatal or not immediately fatal.  These would include Down syndrome, sickle cell anemia, cystic fibrosis, muscular dystrophy, limb deficiencies, hydrocephalus, and any number of conditions involving correctable organ defects.  For example, 90% of babies who are diagnosed in utero with Down syndrome are aborted even though Down syndrome is not a fatal condition.  

 

Obstetricians often have little direct contact during their training with children who have developmental disabilities  Physicians often distance themselves from their own personal beliefs in a commitment to provide balanced information for the new mother.  A survey of 499 primary care physicians revealed that 63% reported that they "tried to be as unbiased as possible about delivering a prenatal diagnosis."  Thirteen percent reported that they "emphasize" the negative aspects of D(owns) S(yndrome) so that parents would favor a termination, 10% actively "urge" parents to terminate, and 10% indicated that they "emphasize" the positive aspects of DS so that parents favor continuation and 4% actively "urge" parents to continue the pregnancy.[2] 

 

Just look at these statistics again. Twenty three percent of obstetricians interviewed purposely present a diagnosis of Down syndrome in a negative light, so that the parents will "choose" to terminate.  That's one doctor out of four.  Your doctor may be that one.

 

PREVENTION

 

The emphasis on "preventing" illness or birth defects has come to mean preventing people who have certain illnesses or birth defects.  Kathie Snow, mother of a child with cerebral palsy, warns, "Do not let a disability label or a doctor's prognosis convince you that your child needs to be changed.  She doesn't need to change or be changed; society needs to change.  Your child is fine just the way she is.  Your child is perfect.  If you don't believe that, change the way you think!   Change your definition of perfect; don't try to change your child.  Either all of us are perfect or none of us are."[3]  "Your belief in your child and his potential has a greater influence over his success than his disability."[4]  We obtain medical care and services, not to "fix" our kids, but to help them realize their potential.

 

To be a mother of a child with a disability is not for sissies, but there is good news-- it will change you. I wondered if I could be a good mom.  Could I actually cope with all of the doctors, the trips to the emergency room, the surgeries, the testing?  There were times when I didn’t think I could. I did. This was my son, my flesh, a blessing, an opportunity to raise a child that I had borne to love and to cherish. I assumed I would do all of the teaching, but this young man has taught me how to continue to be a good and better person altogether. I owe this to my son, who, twelve years ago, was born with such a dismal prognosis that his life would not be worth living. A life that could not possibly be of any benefit to himself or others, a life that, without given the chance, would have been lost and what a much emptier place this world would be. (Ashley, mom of Nick who was born with spina bifida)

 

DIFFERENCES IN PERCEPTION

 

Doctors tend to see babies as clinical diagnoses while mothers tend to see them with love.

 

When I was 20 years old, I, although pregnant,  left my abusive boyfriend. When I went to the doctor, the health care workers said things like, "What do you plan to do about this pregnancy?" In my mind there was only one thing I could do-- have a baby.  In the 6th month of pregnancy I had my first ultrasound.  I'll never forget the words. "Your baby has an abnormality in the brain." At my next ob appointment a women doctor proceeded to explain that I would be better off if I terminated the pregnancy. She told me my baby would be retarded, and that a termination would be best for him. His condition was called hydrocephalus, (fluid on the brain).  I was determined to have this baby even if the whole world was against it! Another doctor recommended that I have labor induced at 32 weeks, so that a shunt could be put in his brain to drain off some fluid.  I told God that I would love my little boy and accept him no matter what. God did give me a healthy baby; the surgery was never needed. Although he still has hydrocephalus, it has caused no problems. Dylan is almost 9 years old now, and how I would love to take him to the doctors and show them the little boy the world would be" better off without." (Shellie, Dylan's mom)

 

Widely used by doctors, The Catalog of Prenatally Diagnosed Conditions (Third Edition) by David D. Weaver and Ira K. Brandt, MD's (Baltimore, Maryland:  The John Hopkins University Press, 1999 with periodic updates) lists over 800 conditions that can be diagnosed in utero.  The text also details how to make the diagnosis. Compare this clinical description of a terminated "fetus" diagnosed in utero with "Urethral Obstruction Malformation Sequence," which includes "Posterior urethral valves" with a mother's description of her son with the same condition:

 

The fetus reported by Nevin and associates (1983b) also had distention of the bladder, abdomen, and ureters, and hydronephrosis; diagnosis of trisomy 18 was made.  After termination and an autopsy, the fetus was found to have double-outlet right ventricle with an overriding aorta, ventricular septal defect, and hyoplastic left atrium and ventricle.  There was no neural tube defect present. (The Catalog of Prenatally Diagnosed Conditions, p. 180-81)

 

At the perinatologist's office, our son was diagnosed with a rare condition called posterior urethral valves (PUV).  The perinatologist also suspected either Down's syndrome, Trisomy 13, or Trisomy 18.  It was suggested that we terminate the pregnancy. We decided to seek treatment options.  In my 33rd week of pregnancy, I went into early labor and had to deliver our son via emergency caesarian section.  A team of pediatricians began working right away on our 6 pound 14 ounce precious little Tanner.   Tanner had only one very underdeveloped  lung that  would not be able to support life.  This was a direct result of the PUV.  We spent the next 36 hours holding Tanner and loving him.  Although I knew my son was dying, I had never been happier in my whole life because he was the greatest gift I had ever received.  I would do it all over again just for those wonderful 36 hours that we had with Tanner. (Renee, Tanner's mom)

 

Here is another description from The Catalog of Prenatally Diagnosed Conditions and then a mother's thoughts on her child born with the same condition:

 

Holoprosencephaly (Includes Aproscenephaly; Cebocephaly; Cheilognathopalatoschisis; Cyclopia; Ethmocephaly) . . . Aprosencephaly . . . The infant reported by Reynolds and Waldstein (1989) had microcephalus, a bony defect of the calvarium in the center of the forehead, a diamond-shpaed opening in midface, a single fused ocular structure, absence of the nose, small philtrum and mouth, and absence of the premaxilla.  At autopsy the cerebral hemispheres were absent and replaced by separate cystic structures, the prosencephalon was represented by an ovoid mass, and there was absence of the crista galli, cribriform plate, and the first, second, fourth, and sixth cranial nerves. (The Catalog of Prenatally Diagnosed Conditions, pp. 96-97)

 

I will never forget my Gianna moving and growing inside of me. I loved her so much.  I knew that her birth would bring her death and I did not want to say good-bye.  I prayed for three things: for acceptance of God's will, for great good to result from her life; and that she would have a nose (because of the holoprosencephaly, she was supposed to have a large cleft between her eyes and an open hole where her nose would be). Praise be to God, she was born with a nose and my children were able to meet her and we have pictures hanging on our wall of her. I also know that a great good will come from this. She has already affected many lives. She has had so much impact on me. God is transforming me. Everyday I pray that God will guide me. For the first time in my life, I am truly listening to His call and have my ears and heart awaiting His direction. (Doreen, mother of Gianna who was born with Trisomy 13 and holoprosencephaly)

 

Doctors are capable of considering as worthless even normal babies who are unwanted by their parents:

 

We had a 24 week gestation baby born today. Mom came into the emergency room with pain early on, wouldn't answer questions of gestational age since little pre-natal care.  .Baby born early afternoon.  Good MD took right to warmer.  Spontaneous cry,(little boy), only needed oxygen,  no CPR.  When Pedi NICU Docs arrived, were told Mom didn't want baby.   But this attending MD said, "I have a patient here, and he's good.  I think we need to go forward.." So, despite the fact that one fellow in OB reminded us all Mom hadn't wanted baby right now, we did everything. (Judy, an ob-gyn nurse)

 

If a doctor is willing to forego treatment for a premature but healthy, yet "unwanted" baby, what might be the response if the baby has a serious health issue?

 

EUPHEMISIMS

 

A euphemism is the substitution of an agreeable or inoffensive expression for one that may offend or may suggest something unpleasant.[5]  Euphemisms are very common in dealing with serious prenatal diagnosis.  Terms that traditionally refer to pregnancy and birth are applied to what traditionally has been called abortion.  This makes abortion sound like birth.

 

We were given 2 choices: we could terminate or we could continue the pregnancy. Most women terminate. "Could you, my doctor, do the termination?" "No, you would have to go to the Women's Center." "But that is an abortion clinic!" I finally understood. Termination was abortion! In my shocked mind I had not understood that!  I need to hold my baby not have it torn apart in pieces! "In that case we can induce labor but would have to inject a solution into the baby's heart to stop it before inducing."  I can't do that! That would cause my baby to die! (Sue, mom of Lucas Adam who was born with anencephaly)

 

Is your doctor suggesting birth or abortion?  Ask your doctor, "Are you suggesting termination so that my baby will be born alive and have the maximum chance of survival or so that my baby will be born dead or dying?" Birth's intent is to bring a living child into the world. Abortion's intent is to bring a dead child into the world.

 

The Level Two ultrasound showed that my baby did have anencephaly.   They said my baby wasn't "really alive" She was only able to live through circulation in the umbilical cord. I asked, "How can she move and kick then???" They said it was all due to the circulation, and that made no sense to me. They likened me to her life support. I thought of patients on life-support, lying motionless, out of it. That isn't my baby! She moves at will and is very much alive.  Joyann would punch out on my stomach, and my husband would push in that spot, then she'd go "bam bam" real hard back in the same spot. Seems to me, if it was all random, sporadic movements, the baby wouldn't be able to move in very controlled movements like that. I feel the doctors just want to "dehumanize" our babies, so they can justify ending their lives.  The perinatal center offered a D&C, saying one doctor "may be able to pull the baby out in one piece." I said, "Certainly not!" They then talked about induction, of giving birth to the baby after they medically induce labor. I  thought it sounded better than abortion. I gave them permission to see if my insurance company would cover the procedure. A few days later, I got a phone call saying it was arranged for me to deliver my baby! I said, "I'm not ready yet!" They pushed me, saying, "It has to be done before 24 weeks." I said, "The perinatal center said I could be induced at ANY time in my whole pregnancy."  "Well, the hospital won't do it past 24 weeks." It started to sound like termination to me.  (Jewell, mom of Joyann who was born with anencephaly)

 

Many parents want to continue a pregnancy while their medical team wants to end it.  The parents think about the positive outcomes of giving birth while the "experts" paint a bleak picture.  Parents are looking for support and information while doctors are pressuring them to decide quickly.  Is it any wonder that many parents conclude that termination is a necessity?

 

The doctor did another ultrasound and confirmed what the other hospital had seen. He told us that the best thing was a selective reduction, which is injecting the sick baby with saline that will kill him. He didn’t explain to us more options or ask us to think about it. We were in shock and scheduled the procedure for 4 days later. I remember sobbing and thinking that we were going to have to end our baby’s life. My husband was inconsolable; we keeping thinking back at the images on the monitor of the babies and their little hearts beating, but we thought that this had to be done to save the other twin’s life.  That Tuesday we went to the hospital.  The nurse brought the babies' images up and I started crying - I asked her what the sex of the sick baby was and she told me "A boy."  Our son - our beautiful son - we were never going to hold him or tell him that we loved him. The other baby was a girl - our daughter - she would never know her brother or play with him.  The doctor could see how distraught we were and he asked if we were sure we wanted to go through with it. I looked at him puzzled and said: “We have a choice?” He then explained that there was a possibility that both babies would abort and that it is quite possible to carry both twins full term but that the anencephalic baby would most likely be born dead or die within minutes of being born.  My husband and I agreed that it was not up to us to make this decision – who were we to take the life of our son - to not give him a chance - miracles happen every day. So we left with both our babies.  As long as they were inside of me I would make sure they were okay.  (Jennifer, mom of Matthew who was born with anencephaly and his twin sister Emily)

 

THE WHY OF TESTING AND TERMINATION

 

Doctors, geneticists, family members, clergy, and friends may suggest termination. Why? 

 

                They want to alleviate your suffering.

 

The attitude of doctors seems to be that the woman can't handle an adverse diagnosis so they want to take it out of the woman's hands and they think she will thank God for their intervention.  They don't give women any credit for being able to handle the baby.  But if you have the baby, once the baby dies, you want to do it all over again. (Erin, mom of Joey who was born with Trisomy 18)

 

                They think you can forget about this baby and try again, and the sooner the better.

 

She told me that my child’s prospects of even being born alive were slim and that if he were born he would have no quality of life. She told me that there really were no alternatives. She told me that I was doing the right thing, and I could be pregnant again and have a healthy baby. She turned back around with an appointment book to schedule an abortion.  (Stephanie, mom of Chandler who was born without any disability)

 

                They are concerned about your physical stamina or mental health.

 

I also went to see a councilor as I was very worried about how the kids would handle me carrying to term. He advised me not to go through the pregnancy as I had a diagnosis of depression and he was worried about my mental and emotional health. What about my mental and emotional health if I had to live my life with the knowledge that I consented to kill one of my children? He said not to worry about the kids as they would adjust to whatever and would follow Doran's and my lead. (Sue, mom of Lucas Adam who was born with anencephaly)

 

                They think you can't handle a child with a health problem.

 

My family thought I'd have a nervous breakdown, that carrying the pregnancy to term would destroy me. My family didn't think of me as someone that selfless.  I think carrying to term is something most people would not do so they can't grasp why someone would do it.  It really challenges their belief system, makes them ask how far are they willing to go.  Andrew was born and he lived five days. He did not have nearly the amount of problems that doctors thought he would have.  We were able to hold him and it was beautiful.  He died on Easter and it was a gift, an incredible journey.  I feel like the odds which the doctors gave me were manufactured.  They tried to encourage me to end the pregnancy.  Most of these babies will be born if given a chance even though they may not thrive. Doctors think that women can't handle it. (Emily, mom of Andrew who was born with Trisomy 13)

 

                They fear that your family will be harmed by a child with a health problem.

 

They fear they cannot meet the needs of the child. I am nobody special. I had no experience with cancer when I had to learn to care for Alex who got leukemia.   I have a little experience with some issues that Sidney may face, but know nothing about feeding tubes or breathing support. But I know I can learn. And I trust the doctors and nurses to teach me well before they send me home.  (Laura, mom of Sidney, born with lethal dwarfism)

 

                They don't want the child to suffer.

               

They fear that the child will not have a good quality of life, and that their condition may cause them suffering, or that treating the condition may cause suffering. We did not want to subject Sidney to needless suffering. But pain that could give her life, or that would help her live better, would be worth it. Quality of life for babies is an issue of love. If they can give and receive love, then life is good for them. Babies who suffer but are loved, live because they choose to. I do not want my baby to suffer, but I do want her to live the life she is fighting to live. I want to make sure that while she fights, she is loved, held, and cared for. When she stops fighting, we will let her go. (Laura, mom of Sidney who was born with a lethal form of dwarfism)

 

                They don't know how they can handle supporting you during the pregnancy or after the baby is born.

 

I told my obstetrician that we wanted to continue the pregnancy and give our child the best possible chance. He told me that we were taking the “harder road.” I asked him three times if he would follow me for the duration of the pregnancy. (He had never had a patient willingly choose to continue a pregnancy with a fatal diagnosis.) He said that he would follow me, but I could sense some reluctance.  I asked him for resources including support groups for women who choose to continue their pregnancies.  He said, “There are no groups like that available.” I asked for the name of another mom who had continued a pregnancy.  He replied that he did not know any. I felt very alone.  (Donna, mom of Jonathan who was born with Potter's Syndrome)

 

                They want to lower hospital and insurance costs.  These costs will be minimal if you terminate.  However, if you give birth to a living baby who requires treatment, the costs could be very high.

 

The results of the blood test prompted the doctor to order an amniocentesis and ultrasound. It was fully paid for by the State of California, as would be the abortion. I was given a consultation, warning me of the risk for a woman my age giving birth to a child with a disability.  This process was about Ben as a long-term expense to the state versus a short-term expense of an abortion. This would be the first of many experiences that would be a clear reflection of attitudes in the policies that guide the lives of people with disabilities and their families.  My life's work would become a challenge to those attitudes. (Terry, mom of Ben who was born with multiple disabilities)

 

They want to study your baby clinically.

 

Most of these babies are terminated. Doctors advise that parents terminate, then agree to an autopsy so they can "study the condition and learn more about it". They do NOT want the parents to continue the pregnancy and try to help the baby LIVE, which would certainly teach them MORE about the condition than dissection ever could. Such an attitude is unfortunately common. (Laura, mom of Sidney who was born with a lethal form of dwarfism)

 

If you are carrying twins or triplets and one of the babies is compromised or dying, people may fear that the presence of the dying baby will threaten the lives of the sibling(s).  This is not true.

 

The ultrasound was being made, first the baby at the right, then the baby at the left and then everything went silent.  One baby had anencephaly.  She would certainly die, either before if not soon after birth. In my thirty second week of pregnancy, Anna and Tess were born.   At first I was afraid to look at Anna, but she was beautiful.  She lived four hours and will always be in our hearts.  When we came back to the hospital after the funeral, we immediately went to our daughter Tess to hold her close and to share our grief.   Tess is 4 years old now and a lovely child with a heart of gold. I am proud to be the mother of my two girls, and I believe that some day we will meet again. (Tineke, Anna's and Tess's mom)

 

                Many professionals may fear that you might sue them if you continue your pregnancy.  You cannot sue if you end the pregnancy because, even though the pressure to terminate may have been very strong, ultimately the decision is yours.  However, if you proceed with the pregnancy and you feel that your baby was improperly treated, you could sue the physician, hospital, and/or other professionals for malpractice. 

 

The routine ultrasound revealed that Andrew's brain and stomach were completely full of fluid.  The doctor said, "It looks like the baby is compromised and has hydrocephalus." I already had two children with Down syndrome (our first born and then her brother whom we had adopted) and I wanted to continue the pregnancy.  The doctor said, "The baby looks so compromised that it could effect your health.  You need to get an amino to be sure."  The amnio revealed that the baby had Trisomy 13.  The likelihood that he would make it full term was 10%.  I was fine with those odds.  I just wanted to nurture my baby and, if he didn't make it, I would honor his life in utero.   All information from the doctors was really negative and disappointing.  Our pediatrician was horrified. He saw "lawsuit" written all over this. (Emily, mom of Andrew who was born with Trisomy 13)

 

                Many people have accepted a utilitarian philosophy that every human being ought to have a minimal "quality of life" or "health."  Babies with severe health conditions require "too much money" and may never be able to "to produce" or "be useful."  One doctor termed this attitude "handiphobia," that is "fear of people with handicaps."[6]

 

Today I was reading an article about ethicist Dan W. Brock at the University of Rhode Island’s tenth Honors Colloquium lecture November 19. “Society might be better off if it prevents the birth of blind and severely disabled children.” Blindness and severe cognitive dysfunction are two disabilities  Brock would prevent.  Ben was born deaf-blind. His cognitive and physical disabilities would gradually reveal themselves. According to Brock, “Preventing a severe disability is not for the sake of the child who will have it. Rather, it is for the sake of less suffering and loss of opportunity in the world.” I see things from quite a different point of view. (Terry, mom of Ben who was born with multiple disabilities)

 

                They do not value the lives of those who are disabled and can't imagine that some people do.

 

"Of course, no one wants to adopt a defective baby " This was said with much emotion (and not much charm) by an older gentleman in a class at a local university.  Since I had told the story of my daughter Karen, born with Down syndrome and a severe heart defect, the pro-abortion students were extremely vocal about the personal and societal justifications for aborting a baby like Karen. Hence the statement about no one wanting to adopt a "defective" baby.  "Happily, sir", I told the senior student, "you are wrong. Even back when I had Karen, I found out from the National Down Syndrome Association that there was a list of people waiting to adopt a baby with Down syndrome. Just last night," I added, "I  found a new website for matching prospective parents with children who had chromosomal and physical defects." The student refused to believe that this could be true. (Nancy, Karen's mom)

 

                People may believe that the baby has no soul, is not a person, or is not human yet. 

We remembered this passage from the book of Psalms. "You formed my inmost being; you knit me in my mother's womb. I praise you, so wonderfully you made me; wonderful are your works! My very self you knew; my bones were not hidden from you, when I was being made in secret, fashioned as in the depths of the earth.   Your eyes foresaw my actions; in your book all are written down; my days were shaped, before one came to be. How precious to me are your designs, O God; how vast the sum of them!" (Psalm 139:13-17).  We knew that God made Arriana just the way she is and that His ways are perfect. (Stephen, dad of Arianna who was born with anencephaly)

Some do not have a strong faith in God or in a Power higher than themselves.

 

The thought of abortion did cross our minds when we reached a low point, but that passed and we trusted that God knew what he was doing when He created this child.  (Patricia, mom of Jessica who was born with limb deficiencies of both arms and both legs)

 

NEGATIVE EFFECTS OF TERMINATION

 

Some parents terminate their pregnancies without remorse.  That is not always the case.

 

There is no more devastating experience in a woman's life than to have her child destroyed in her own womb.  The loss will never go away.  The fact of a deceased child is just as real to the mother who had her child aborted as it is to the mother who sacrificed to save the life of her child but who tearfully stands beside his grave. With one exception; the guilt of a mother who has aborted is overwhelming, and especially so when it has been denied.  (Joan, mother of an aborted child).

 

Parents who terminate may be left with regrets and the nagging feeling that you did not do all you could have done for your child.

 

Josephine had a heart defect and a rare chromosomal disorder.  A genetic doctor explained that, if our child lived, many  surgeries would be needed to correct muscular and skeletal problems.  Our baby would be severely physically and mentally retarded.  Her physical features would be distorted and deformed.  I had never been so afraid.  One of the doctors stated that we needed to discuss our options.  I thought she was referring to what needed to be done at the time of delivery.  She was actually speaking of abortion, or “terminating the pregnancy”.  My mind was reeling.  My first response was “no way.”  But somewhere between that moment and that evening, I had decided to kill my beloved child, my Josephine.  At 36 weeks- 9 months-- pregnant I laid in a clinic while a doctor injected my baby’s heart with something to stop it from beating.  I then went into labor before I was supposed to, and the doctor had to inject my baby again in order to make certain that she would definitely be dead when she was delivered.  It was the most selfish act I have ever committed, and I regret it every single day. I have come a long way since then.  But I hurt so much.  I still can hardly bring myself to speak to Josephine, my daughter in Heaven.  I still cannot forgive myself for what I’ve done.  Why didn’t anyone tell me that I would carry around this guilt and sorrow?  Why wasn’t I informed that my “choice” would cost me so much, emotionally and physically?  Why didn’t anyone remind me that a sick baby needs her mother to care for her and love her? (Dina, Josephine's mom)

 

Your spouse may not initially be supportive of carrying your baby to term.  It takes time to adjust.

 

My husband thought that I was out of my mind for two months.  I had to go forward with or without his blessing.  It was a very stressful time in our marriage. Eventually my husband became really, really supportive.  He is so proud of Andrew and in love with him, and now he totally understands why we went through to birth.  (Emily, mom of Andrew who was born with Trisomy 13)

 

The news given by the doctor didn't leave me feeling anxious until the baby's father said, "We will have an abortion then.  Life would be too hard for the baby."  Today Ben's dad loves his son deeply, but the journey he is on is quite different than mine. (Terry, mom of Ben who was born with multiple disabilities)

 

Fathers, too, can be adversely effected when they end their child's life. 

 

We went for a sonogram at about twenty three and one half weeks.  Emmanuelle was diagnosed with a brain anomaly which included seizures and clenched fists.  I don't see clenched fists. I don't see seizures.  All I see is the most precious beautiful profile of a little girl looking skyward, eyes bright and open, the most beautiful of my three children, with her hands in front of her as if she is praying.  This is the image etched in my mind forever.  I let the doctors kill my daughter via a huge needle, a shot to the heart through my wife's belly as she lay sedated.  I sat nearby, quietly praying to the Lord, "Save her soul."  The doctor had taken a picture of Emmanuelle.  I suppose it is a picture of her lying dead on the table.  I have not looked at the picture.  But I know exactly where it is.  I will always know.   The grief is unbearable sometimes.  Does the fact that I murdered my daughter show on my face? (Eric, Emmanuelle's dad)

 

MISTAKEN DIAGNOSIS

 

Prenatal tests are usually accurate.  But sometimes they are not. 

 

My pregnancy was rough, my boyfriend was not very supportive.  Once I saw the ultrasound at 18 weeks I was in love!  Then my world came crumbling down. The baby I had thought of terminating months earlier, whom I had grown to love, would possibly be born with birth defects. My ultrasound showed a dark spot on the heart, enlarged kidneys and thickening of the neck, which are characteristics of Down syndrome. I was at greater risk because my uncle has Downs. They couldn't guarantee me a healthy baby without an amnio, which I refused, because of the miscarriage risk. I was told I could terminate up to 23 weeks if my baby was to be mentally impaired. My boyfriend and I decided to hope and pray for the best.  Shane William was born, 3 days late and perfect. (Bonnie, mom of Shane who was born without Down syndrome)

 

In September of 2001, my whole world changed.  The first blow was the terrorist strike on 9-11.  I began to question the security that I had held so dear to my heart.  In the weeks that followed, my doctor told me that I was pregnant.  My husband and I were struck with disbelief.  We had taken precautions.  The early months of my pregnancy were grim.  My husband. lost his job.  We were forced to survive on my income.  My son, who was two, was diagnosed with a seizure disorder.  We lost our medical insurance. My daughter was three.  We finally found state funded agencies that would assist us in finding insurance.  After enduring this struggle for three months, my husband found a new job and I went for my ultrasound alone.   The ultrasound technician said that most likely the doctor had predicted the wrong due date.   So I was scheduled to come back in two weeks.   It appeared that my child was a good candidate for Down syndrome and that my child's stomach was outside of his body.  I had miscarried my last child and the emotions of that time came rushing back.  One week later they added the possibility of toxoplasmosis, and water on the brain.  I couldn't understand why God would let this happen.  I lost my daughter and now I was going to lose my son. Even if I didn’t lose him, how could I take care of him? I already had a child who took so much energy dealing with his disabilities.  The genetic counselor recommended an abortion.  I asked her, "How could I even consider killing my child based on a theory?"  She suggested an amnio which would confirm any doubts. I asked why this would not be performed before recommending an abortion.  She told me in cases such as mine there is little doubt so it is unnecessary, but they would do it if it eased my mind.  I was also scheduled to see a pediatric cardiologist.   The cardiologist found a hole in his heart that should close up by the time he was born, but couldn’t tell us that for sure.   We were offered information on the abortion process once again.   When the amnio and blood tests results were in, the genetic counselor told me that the tests came back negative, but there were strands of genetic defects that are undetectable.  I was to come back for further testing. Everything came back in our favor.   The doctors ordered another ultrasound.   The new diagnosis was Dwarfism.  I was scheduled for an induction (three weeks after the due date).  My son was born 5 pounds, 12 ounces, 19 inches.   Chandler's head was swollen.  His soft spot was enormous.  The CAT scan came back fine.  Now Chandler is 18 months old.  He has not only met his developmental goals, he has exceeded them.  My child has no signs of any of the disabilities that were predicted for him.  (Stephanie, mom of Chandler who was born without any disability)

 

Consider prenatal test results to be "probably correct."  Accepting the diagnosis enables you to make plans for the future.


 

 

[1] Skotko, Brian G.  "Prenatally diagnosed Down syndrome:  Mothers who continued their pregnancies evaluate their health care providers."  American Journal of Obstetrics and Gynecology (2005) 192, p. 675.

 

[2] Skotko, Brian G.  "Prenatally diagnosed Down syndrome:  Mother who continued their pregnancies evaluate their health care providers."  American Journal of Obsetetrics and Gynecology (2005) 192, 670-71.

 

[3] Kathie Snow.  Disability Is Natural: Woodland Park, Colorado:  Braveheart Press, 2001, p. 63.

 

[4] Ibid. p. 64

 

[5] Merriam-Webster On Line Dictionary definition. m-w.com/dictionary/euphemism'

 

[6] Dr. Carlo Bellieni, neonatologist, in his course "The Myth of the Perfect Child," given at the Regina Apostolorum Athenaeum's School of Bioethics.  From a Zenit News Agency internet release, 16 December 2005.