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Volume 13, Number 3
Witness: Amniocentesis
Amniocentesis: The Struggle to Choose
Wendy Hogarth
My third child was born with the chromosomal abnormality, trisomy 13. He died when he was four days old. It was an incredibly sad time full of questions, uncertainties, and grief. In dealing with Jared's birth and death, I came to examine a number of issues-issues that I believe need further discussion, issues that involve the choices couples face when expecting a baby.
My son's condition could have been detected with an amniocentesis. Indeed, since I had turned 35 during that pregnancy, amniocentesis was offered to us, but we chose not to have it. We were also offered other tests; maternal serum screening (MSS) and ultrasound. Each test has its own risks, benefits, and limitations and each can lead to more choices.
The first decision is whether to have tests performed and, if so, which ones. If the results of any one test are unfavourable, couples can choose more tests. Ultimately, couples may be faced with the decision to terminate a pregnancy.
These can be extremely difficult choices. Is the support given to couples making these decisions adequate? What support is there for couples who decide to terminate a pregnancy? What about the decisions themselves? Are any limits placed on the choices couples can make? I began to ask these questions as I worked through my experiences with my son, and I believe we need to open a dialogue around these issues. I hope that by relating my experience I will show some of the places where the dialogue needs to begin.
When my husband, Murray, and I were offered amniocentesis, we read all the literature we could find. Age 35 is a "magic" number we learned because at that age the risks of miscarriage attributed to the amniocentesis procedure and the risks of having a child with genetic abnormalities become virtually equal. Therefore, Murray saw amniocentesis as doubling our risks: we were already at risk for having a child with genetic abnormalities, and to that we would be adding an equal risk of miscarriage by having the test. My concerns lay with the decisions we would have to make if genetic problems were discovered. At that point, I would be at least half way through the pregnancy. I would have begun to feel movement. Intellectually, the baby would be a fetus; emotionally, it would feel for all intents and purposes like a baby. I would have to decide whether to kill that baby.
My first two pregnancies resulted in normal, healthy boys. My third pregnancy ended in miscarriage at 12 weeks. When I lost that pregnancy, it was as if I'd lost one of my boys. Already, I had bonded with that baby and had projected my experiences with my two children onto that new life. Intellectually, I knew I miscarried because the baby was not viable; emotionally, I'd lost a child. If the amniocentesis indicated an abnormal fetus, I knew I would face the same intellectual and emotional upheaval.
I was also surprised at how much grief I had experienced after that miscarriage. Our society tends to view miscarriage as a blessing. It is "all for the best" because something was wrong with the fetus. Society does not seem to recognize that a miscarriage is still a loss that brings with it a grieving process. Amniocentesis carries the risk of miscarriage. I knew what it was like to have a natural miscarriage. I couldn't imagine how I would feel if I miscarried a healthy fetus as a result of choosing amniocentesis. For all these reasons, we decided not to have the test.
The MSS and ultrasound showed nothing unusual. I was surprised then when my water broke four weeks early. I was nervous, but reassured myself remembering that many babies are born early with no problems.
When I delivered Jared Adam Johnston, the first thing I saw was his bilateral cleft lip and palate. I realized I would be unable to breast-feed. I was incredibly disappointed. With Jared, I would miss the things I had experienced while nursing his older brothers: the bonding, the closeness, the peace, the sensation of comforting and being comforted, the specialness of a relationship only I could share with him, and the pride as he grew and thrived. I knew though that the defect could be repaired. Murray and I held hands as the obstetrician took Jared to the table nearby to examine him more closely.
The atmosphere in the labour room was very different compared to my first two deliveries. Jared was received very quietly by the medical staff. Northrop and Slater, our older children, were greeted with joy and the boisterous pronouncement, "It's a boy!" As they were examining Jared, I had to ask whether our baby was a boy or girl. The nurse didn't know; she stopped and checked. "He's a boy," she said quietly.
Jared was taken to another room. When the nurse finally returned, we discussed Jared's cleft lip and palate. "There were," the nurse said, "a few other small problems."
Actually, Jared's problems were quite severe. His fontanelles had not come together properly at the top of his head. His eyes were one-third normal size and Dr. Smith, the pediatrician, was uncertain whether they had pupils. His chest was small and bell-shaped and his lungs were also small. He had no testicles, a club foot, and an extra finger on each hand. It was a tough list to hear. After much soul-searching, my husband and I told the staff to take no extraordinary actions. Finally, they brought Jared to us and we were able to hold him.
He was not expected to survive his first day. We took him back to our room to spend as much time with him as we could. We held him, rocked him, and slept with him between us on the hospital bed. When we had the courage to unwrap him, we found he was naked. I was surprised and saddened that the staff considered his life so transient that there was no time for the dignity of clothes, or even a diaper. Even with a baby as extraordinary as Jared, it would have helped me if he'd been allowed to be somewhat ordinary-if he'd been weighed and clothed and given a hospital bracelet; if from the beginning he had been treated like any new baby.
However, we were happy with the care we received. The staff at the hospital were wonderful-compassionate and supportive. The first day they left us mostly to ourselves, but appeared occasionally to offer assistance. At one point, a nurse came in and asked about baptism. We were grateful for this suggestion. For his baptism, Jared was finally dressed. After that, he seemed to improve. The clothes probably kept him warm and lessened his struggles.
When Jared survived into his first evening, Dr. Smith returned with a different prognosis. He felt that Jared's life was no longer in immediate danger and that we should start thinking ahead to the time when he would come home. He believed Jared's difficulties were due to a host of developmental abnormalities and, while he could guarantee that Jared would not be a normal baby, he could not predict what Jared would be able to do.
I was terrified. I was concerned for my older children. They were still so young and needy what would happen to them with a brother who would require so much attention? What kind of support would there be in our small community? Was I capable of meeting the challenge?
I asked Dr. Smith if an amniocentesis would have discovered Jared's defects. He didn't think it would have. I was astounded to think that abnormalities as severe as Jared's could go undiagnosed even by that sophisticated test.
That evening, finally, Jared was weighed. He and I were given matching hospital bracelets and he was given eye drops and a phenylketonuria (PKU) test. He was slowly being claimed. Our baby was going to live. We were terrified.
Tests the following day were inconclusive. Again, the doctors discovered nothing immediately life threatening, but added a spinal cord defect to the list of abnormalities that had been noted at his birth. Dr. Smith also told us not to depend too much on tests. They would tell us about Jared's structure, but would not predict his function what he would be able to do. More tests were scheduled, tube feeding was begun and Jared was placed in an oxygen isolette. I could no longer hold him.
I spent that day on a stool in the neonatal unit watching him and thinking that, of my three children, he was the neediest. Yet, he was the one I could do the least for. We had observed that he improved when we held him, yet to aid his survival we could no longer cuddle him. I couldn't even offer him the comfort and nourishment of breast-feeding. My milk dripped away like tears, as if my body was in mourning.
Through his second night, he went from needing 35% oxygen to needing 70-80%. By the morning of his third day, his prognosis had changed again. At this point, Dr. Smith conferred with another doctor and they felt confident that Jared suffered from trisomy 13. We were told that it was a fatal condition.
Jared was taken out of the oxygen isolette. Murray and I spent another day with our son, holding him, expecting him to die, and wanting to be there when he did. Again, Jared improved through the day and by late afternoon looked quite pink. That evening he met his brothers. Finally, we were able to welcome Jared into our family. It was an incredibly precious time.
With Jared doing so well, Murray and I began discussing the possibility of bringing him home. The prospect was no longer frightening. Jared was more than a list of problems. He was our son and we loved him. In nervous anticipation, we arranged to bring him home.
Jared died the morning he was to come home. It was heartbreaking. My emotions had swung from being terrified of his living to being devastated by his death. We were given time to start mourning the healthy baby we had hoped for and an opportunity to accept Jared for who he was. We had grown to love him. What we wanted, in the end, we were denied- time to imprint his life more firmly on ours.
Murray and I went to the hospital the day Jared died. We held him and, reluctantly, said goodbye. When we came home, we were hungry for information. Our community is small and its resources are limited. However, we have a computer and so I "logged" onto the Internet to see if I could find information about trisomy 13. I came across two different experiences from parents who knew before their babies were born that they suffered from trisomy 13.
The first account was the statement of Claudia Crown Ades when she appeared at a press conference with NARAL-The National Abortion and Reproduction Rights League:
In October of 1992, when I was six months' pregnant with our first child, my husband and I were informed that our baby was plagued with severe anomalies including extensive brain damage, a seriously malformed heart, eyes on either side of its head and much, much more. It was trisomy 13. There was no chance of his survival.
Gone were the hopes of a dearly wanted pregnancy. In the best interests of our baby, our families, and our future children, we made the difficult choice to have an abortion. In consultation with our team of doctors and our family we chose to have the intact D & E procedure that Congress is attempting to outlaw. This procedure was the most humane and dignified way for our baby to die, and it protected my reproductive health. For the record, no scissors were stabbed into our baby no brains were sucked out and he wasn't yanked through the birth canal. Rather, I received heavy doses of anesthesia, which went directly to my baby. My cervix was dilated to make passage easier. A small amount of fluid was removed from his skull using a needle in order to gently case my son from my womb. He passed away peacefully and painlessly. Destined to die, he was given a dignified death.
Before I start comparing, let me first acknowledge that this was indeed a "difficult choice," and I do not believe that there is a night and wrong to this issue. I think, though, that there is a need for dialogue on the ramifications of the choices modern medicine has presented to us.
When I read this account, I could not help comparing the humane and dignified death of Ades' baby with Jared's death. I was able to hold, know, and love my son. Jared was born, named, held, baptized, introduced to his brothers and extended family, and above all, he was loved. He died connected to a family and is buried in the family plot near his Grandpa.
My husband and I benefited from a system of social conventions and traditions. Our friends and families called us throughout our experience to offer help and support. We received flowers, cards, and letters. We shared our grief and experiences of Jared's funeral. We have a grave we can visit, and it is comforting to know Jared is buried with his family.
And we have memories. We have a picture of Jared that sits on the mantle beside the pictures of his brothers. We also have a picture of us as a family. We have ways of remembering him and talking about him-ways of dealing with our grief I don't believe our society offers these means of support to those who make the decision to terminate the pregnancy.
Medicine gives people choice, but how does society support that choice? How do we help those parents deal with their grief? Just as miscarriage is seen as "for the best," so likewise I fear, would an abortion be seen as a "blessing." We should recognize that it still is accompanied by considerable grief We do not have any social structures in place to support couples who chose amniocentesis and pregnancy termination. The best we can offer is "the right to choose" while society looks the other way and ignores the situation. Couples are left to deal with their grief in secret and alone.
Some couples might even come under attack for their decision. There are those who don't look the other way those that don't believe in the night to choose. When Ades writes, "for the record, no scissors were stabbed into our baby, no brains were sucked out and he wasn't yanked through the birth canal.., one can conclude that she had come under some attack for her decision.
A few days later, I visited the Internet again and came across an account by Mark, Tracy, Meg, Justine, and Molly Rivera:
On November 22, 1995, the day before Thanksgiving, Mark and I went to get what we thought was going to be a routine ultrasound; I was 6 months pregnant. The ultrasound was anything but routine... We were told our baby had hypoplastic left heart syndrome and most likely trisomy 13 - a lethal chromosomal abnormality The next few months went by in a bit of a fog for us. We were desperate to spend as much uninterrupted time as possible with our Jacob. We wanted the chance to hold him, to talk to him, to sing to him, to change his diaper, take pictures, and basically make as many memories with him as possible. We wanted to KNOW that he was a part of our family We wanted our three daughters to see, touch, smell him, and know they had a little brother. We prayed for time with him. Our friends were supportive. They even had a baby shower for us. It was a special one. The gifts were things we could use to make those special memories: Picture frames, scrapbooks, a handmade baby quilt, hand-crocheted booties, and a porcelain family with a Mommy, Daddy, three daughter, and a little baby boy among other things. We had prayed continuously for a miracle and some time to spend with Jacob. I think Heavenly Father truly did answer our prayers. Of course it just didn't seem like enough time. We didn't even get to take all the pictures we wanted. But the truth is, we really are grateful for the time we had.
These two accounts represent the extremes of choice facing couples who know the condition of their baby before birth. The two stories have very different "tones." The one by the Rivenas is sad, but peaceful; Ades' testimony seems defensive. I do not suggest that there is necessarily a right and wrong. Perhaps, however, this is a result of a difference in societal ne-actions to these decisions. Rivera was given a baby shower; Ades was accused of choosing to stab scissors into her baby.
After Jared died, my husband and I received genetic counselling. The geneticist, Dr. Jones, commented that in some ways our experience was easier than that of other couples. Our baby had a fatal condition. He died and now my husband and I can grieve and move on. Parents with children who live with severe disabilities face many more challenges. Marriages often fail and families suffer. His point is valid. Yet, it has the ring of the "for the best" argument I ran into when I miscarried. It denies the beauty, growth, and love that can come out of even the most traumatic of situations. It denies that tragedies can bring us closer together.
As Dr. Jones pointed out, however, my experience was with a baby with a fatal condition. That is also the case with Ades and Rivera. What about parents whose disabled children live? After Jared's death, I received information from SOFT Canada (Support Organization for Trisomy). I read accounts written by parents with children born with mosaics, translocations, or partial trisomies. These children live with varying levels of difficulties, and the parents' stories are full of love, courage, and hope.
Many people called Jared's death a "blessing." I'm afraid I can't see it that way. I acknowledge his dying made our lives easier, but by the time Jared died I didn't want an easier life. I wanted the chance to love my son with all the hardship that would have entailed. To call Jared's death a blessing denies the blessing of his life. It denies the growth which my family and I experienced as a result of having known him. It denies that there was something about his life worth living. Yes, he was severely challenged, but he fought for life.
Of course, we all hope that our children will be born healthy, but are we looking for "guarantees" that this will happen? Also, are we saying that children who aren't healthy don't have lives that are worth living, or shouldn't be lived at all? Do we deny the joy and love these challenged children can bring to those around them? These are incredibly difficult questions to answer, but they lead to another important question: What is considered "healthy?" Where do we draw the line?
Despite all the obvious symptoms our son exhibited, Dr. Smith could not tell us what Jared would be able to do as he grew older. Would he be able to walk? Communicate? Think? Dr. Smith couldn't answer those questions, and he was examining a live baby. How, then, can we answer those questions about a baby still in utero? How much information can couples really be given? How accurately can "quality of life" be predicted?
What criteria should be used to terminate a pregnancy? How do we decide? Should a couple be allowed to terminate a pregnancy based on profound developmental abnormalities, correctable problems, sex, or whether or not the mother (as in Britain) can afford the second child in a twin pregnancy. We now can diagnose many conditions that would have gone undetected before.
Dr. Jones observed that he didn't envy the choices his children would have to make when they began having children. He believes that genetic testing will advance to a point where geneticists will be able to tell parents whether their unborn child will develop cancer later in life, or how intelligent their child is likely to be. Therefore, his children our children-will be faced with even more difficult decisions. Where do we want to go with this? Do we want, or is it even possible, to develop guidelines for pregnancy termination? What will happen if we don't set limits?
Dr. Jones also assured us that, if we were to have another child, an amniocentesis would show whether or not the baby had trisomy 13. This was not as comforting as he intended it to be. I knew that this test did not offer complete guarantees. Abnormalities as severe as Jared's, which stemmed from another source, could go undetected. And even if defects are detected, the child's capabilities can not truly be predicted. There is a huge range of abilities.
As a society, we tend to put a great deal of faith in medical tests. How much faith are couples putting in amniocentesis? MSS? Ultrasound? What can these tests really tell us?
These last queries are related to the question of how well medical professionals explain these tests. When we met with the geneticist, Dr. Jones, we discussed the likelihood of having another child with trisomy 13. A lot of numbers were bandied about. The medical profession seems to rely on statistics in these situations. But what do statistics really tell us? We've been told that trisomy 13 occurs once in roughly 5000-10 000 births. Pretty small odds. If these were lottery odds, I wouldn't buy a ticket. Yet, I "won" the lottery
I wonder instead if it would be better to discuss these situations from the perspective of what it would be like if it happened, not from the perspective of how statistically likely it is to happen. I asked Dr. Jones what a pregnancy termination looked like. He described how long my hospital stay would be, that labour would be induced, that the baby would be born normally, but would be too premature to survive. Then I asked him, "Then what happens? Do we all stand around and watch my baby die?" His response was, "First of all, it is a fetus, not a baby" He didn't say anything more.
His response suggests a certain discomfort, a certain defensiveness. If medicine is going to venture into this area, its professionals should be able to counsel couples who wish to be prepared. What does happen to the baby? Emotionally, can the couple distinguish between a fetus and a baby? What support is available if a couple decides to terminate a pregnancy?
Couples having children are faced with extremely difficult choices. How well are the consequences of these decisions explained? Statistics don't tell the whole story Numbers and dispassionate definitions of "fetus" do not help to explain the greater emotional issues. Is any sort of psychological support available in these situations? In my experience, there was not. Dr. Jones was very much a scientist. In fact, everyone we dealt with during and after our experience was untrained in dealing with emotions. The people we met were kind and compassionate, but we did not come into contact with, nor were we referred to, anyone trained in psychology or psychiatry While I was pregnant and making decisions about tests, most of the information we read did not explore the psychological issues. Instead, the discussions focused on statistics and probabilities.
Then, we must ask: how well are couples equipped to make these decisions? How does society support couples making these decisions? Where do we want to go with these choices and should there be limits? What do we value as a society? Do we believe that life should come with "guarantees" and are guarantees even possible? Are couples falsely expecting that guarantees are present and that these tests are definitive?
My experiences may have caused me to ask all these questions, but I certainly don't have the answers. However, I believe that we need an open dialogue to look for answers. Or, since answers will likely prove elusive, we should at least define the issues more clearly. Hopefully, the experience and the expertise of the many different kinds of health-care professional can help clarify these issues. My experience is a personal and specific starting point for what I hope will be a more general discussion.
As a footnote, Murray and I have just discovered that we are expecting another child. The news makes us nervous, but mostly we're happy. We want this baby for all the same reasons we wanted Jared, and our experience with Jared did not make us too afraid to try again. If anything, Jared probably made us stronger. He will always have a special place in our hearts, and in our older two boys we have evidence that miracles do happen.
We have decided not to have amniocentesis. We will not because of the risk of miscarrying a healthy baby. Also, even if we knew our baby had genetic abnormalities, I doubt we could decide to terminate the pregnancy This is a personal decision and one I would not attempt to make for anyone else. I will carry this child with love and in the hope that he or she will be born normal and healthy. If our baby is born with defects and disabilities, we will deal with them with love, and we will hope for the love and support of our families and community We will pray for courage.
P. S. Our readers will be glad to know that after this paper was accepted for publication, Wendy gave birth to a healthy baby boy.
Correspondence to: Wendy Hogarth, c/o Dr. JR. Wilkes, Centennary Health Centre, The Shoniker Clinic, 2877A Ellesmere Road, Scarborough, Ontario M1E 4C1, Canada.
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