Personal Choice
Diagnosis: Turner Syndrome
By Grace's Mom
Our Story of Prenatal Diagnosis and Personal Choice
"Prayer is not asking for what you think you want, but asking to be changed in ways you can't imagine." Kathleen Norris
There was a bounce in my step walking up to the maternal fetal medicine clinic; I was so happy and it was a beautiful day. I was pregnant with a
swollen lower belly and firm, perky breasts. I was filled with hope that I would finally get to experience the thrill, joy, and challenges of being
a mother. The leaves on the trees were bright with color - some of them falling through the crisp autumn air, the sun rising over the mountains and
the sky so blue. I thought "We are pregnant! And we can finally let ourselves relax and enjoy the pregnancy because we've basically made it to the
end of our first-trimester!" I knew that there was an extremely slim chance of miscarriage after the first-trimester, and thought, "We'll certainly
be in the overwhelming majority of pregnancies that make it." Pregnancy is always a time of some concern and fear about what is ahead, but more than
that it is usually a time of great excitement and anticipation. A healthy baby would have been the most likely result at this stage of pregnancy,
but unfortunately the outcome for us would be different.
We had already seen a blurry ultrasound image of our tiny embryo at a 9 week routine prenatal visit in the obstetrician's office. My husband
joined me for the visit to see the baby's heart beating for the first time. The doctor reassured us that all was fine. We were going to have a baby!
I began to get really excited. Planning in my mind where the baby's room would be. Where we'd put the high-chair in our kitchen which would require
some repositioning to make room to fit everything. We told a few of our closest friends and some gave us early pregnancy gifts including a soft
teddy bear for the baby and a pregnancy organizer to help us plan and care for pregnancy, birth, and early infancy. Friends also offered us
hand-me-downs like maternity clothes and a glider chair for nursing, a diaper bag, infant toys, and clothing. We were being warmly welcomed into a
new culture of pregnancy and parenting. The few friends we told were so happy for us. We talked of the fun our child would enjoy playing and growing
up with their children.
I began knitting a cream colored patterned blanket for the baby, imagining her soft skin, tiny hands and feet, and facial features developing
inside me. I was looking forward to meeting her; to wrapping her body with the blanket as my hands worked through the motions of each knit and pearl
sequence. My husband and I both thought she would be a girl. I even dreamed that she was a little girl that I delivered vaginally with no doctors
or nurses, but just with my husband present. She looked healthy enough, but was very, very small. I knew she was too small to survive life in the
dream, but I didn't focus on it. It was just a dream and, like many dreams, I could not make sense of it.
My neighbor and friend across the street is also pregnant; she will be due this Spring just a few weeks before I would have been. I watched her
for clues, what would the next step of my pregnancy be like? Very early on I offered her a taste of a marjoram orzo salad that I'd made with produce
from the farmer's market. She refused, saying she was much too queasy to try it. Soon the same queasiness and aversion to vegetables appeared for me
as well. Before long I couldn't stand to be in the same room as a zucchini. I felt like I was following in her footsteps and I was so glad to have
a friend who could help guide me through the unfamiliar territory of pregnancy and childbirth. We walked together in our neighborhood regularly, a
few times even in drenching Fall rainstorms giggling in the wet and cold with the shared knowledge of our growing children-to-be tucked warmly and
safely inside us.
Due to my history of first-trimester miscarriage, I was using natural progesterone suppositories. Progesterone is not a drug I have enjoyed taking;
in fact I hate what it does to me, but I learned to tolerate it for the sake of our baby. I inserted a chalky white suppository into my vagina
morning and night for weeks in hopes that the drug might help to keep me from miscarrying this wanted child. We had been trying to get pregnant now
for two years and finally it seemed that I was successfully carrying a viable pregnancy. We'd done it!
I would do nothing that could possibly harm the baby. I researched at length to find a preservative free flu shot without thimerosal so that I
would not expose the baby to mercury or influenza. I ate organic food whenever possible and never drank coffee or alcohol. I even stopped my regular
morning yoga ritual because the director of the yoga studio conservatively thought I shouldn't practice yoga in my first-trimester due to my history
of previous miscarriage. With less exercise, I began to gain weight more quickly and before I knew it I couldn't fit into my old clothes. I packed
away my "skinny clothes" into the basement and filled my closet with "bigger clothes" the night before I learned of our baby's problems.
We scheduled a routine nuchal translucency ultrasound screening at 11 weeks, part of the first trimester sequential screening offered at our
hospital. We had dinner reservations arranged with my in-laws to surprise them with the news of our pregnancy the night after the ultrasound. We
thought it was wise to wait to tell them until we had positive confirmation from the screening. They were eagerly hoping for a grandchild and we
did not want to stir their excitement too early and risk later disappointment, but at this point we felt it would be safe to share the news and I
envisioned the delighted smiles we knew would fill their faces.
I hopped up onto the ultrasound table ready to see an image of our baby on the screen. I was unaware of my blood test results, drawn ten days
earlier, showing a 1 in 8 chance of chromosomal abnormality which had not yet been discussed with me. My neighbor had told me about her nuchal
translucency screening ultrasound and how she could see the baby's arms and legs moving. I could barely wait. I saw the tiny fetal form immediately;
her heart was beating and her arms and legs moved occasionally. She appeared happy and healthy to my untrained eye in her safe uterine home. The
ultrasound technician chatted politely with us and never let on in any way about a problem; she simply got up and left the room to get the
perinatologist so that he could review the ultrasound with us. This was normal procedure as far as I was concerned. As she left the room, I called
out to her: "This is the best ultrasound we've ever had!" I was so excited, because we'd had three ultrasounds with our last miscarried pregnancy
and they showed the demise of our embryo in steps, with the last ultrasound confirming in utero embryonic death at 9 weeks.
The perinatolgist was a bit serious, but sharing small-talk with us as he checked things over. Then, and I will never forget this terrifying
moment, the small-talk ceased abruptly, and his voice changed. He said "There is something very wrong with your baby." As we digested these words,
he slowly began to point out fluid in our baby's body that should not have been there. A large fluid filled mass called a septated cystic hygroma
was bulging from the back of her neck as well as fluid in her abdominal and scalp tissues. He said he wanted to confirm what he was looking at and
called in another perinatologist. The second doctor, an expert on cystic hygromas, gently confirmed the fetal abnormalities. Both perinatologists
agreed that we needed a chorionic villous sampling (CVS) as soon as possible to get cells from the placenta to determine what was wrong with our
baby. There was a 50% chance of a chromosomal problem and maybe as much as a 40% chance of a severe structural anomaly, like a cardiac defect. The
baby was very ill, but at that point they could not tell us if the baby would die or if the baby could live.
Sweat was dripping from me. I was in shock. I was never in denial because of the confirmatory information provided by two expert physicians
telling us the same thing in unison. I could see the ultrasound images and once the doctors pointed out the abnormalities, then I knew there was a
serious problem. Not just the cystic hygroma, but also fluid in other parts of the body where it should not be. I consulted with my obstetrician
for his opinion, because I knew there were risks associated with a CVS procedure and I still did not want to do anything that could possibly hurt
the baby. Yet, on some level I already felt it would be understandable if this terribly sick baby died and I knew the 1% risk of miscarriage from
CVS was clearly less than the risks of death the baby would naturally face. We needed more information so with blessings from my obstetrician I
consented to the CVS procedure.
The perinatologist usually inserts a needle during CVS through a woman's abdomen into the uterus and removes a small piece of the placental
tissue that is sent for chromosome testing. My uterus was retroverted so the doctor entered through my cervix instead of my abdomen while the other
perinatologist provided continuous ultrasound monitoring. The procedure went well with no harm to the fetus. He extracted the tissue and a rapid
fluorescent in situ hybridization (FISH) test was sent immediately for chromosome analysis. We could expect results in a few days from FISH, with
more detailed results of chromosome analysis in a few weeks. CVS is not a widely available procedure. If it was not available in the city where I
live (which is the case for most women) I would have had to travel out of state or wait until the second-trimester for an amniocentesis. I will be
forever grateful for the two caring, expert, and sensitive perinatologists who helped us to get a diagnosis so quickly.
The perinatologists explained that with the diagnosis of cystic hygroma there was a 50% chance the fetus would test positive for a chromosome
problem and then we would know the diagnosis relatively quickly. On the other hand, if our baby was one of the 50% that did not have a clear-cut
chromosome problem then ascertaining the diagnosis would be more difficult and would take many weeks. In the latter scenario we would be offered
serial ultrasounds to monitor fetal progress and then an echocardiogram by a pediatric cardiologist at the children's hospital at 18 weeks to
carefully evaluate for cardiac anomalies. There was also a terrifying chance that we might never receive a definitive prenatal diagnosis.
I was taking notes on a piece of paper and tried my best to write everything down. My head was spinning so it was hard to think straight. The
doctors gave me a paper titled "First-Trimester Septated Cystic Hygroma." The study reviewed results of 38,167 women screened with nuchal
translucency ultrasound. 134 fetuses were diagnosed with cystic hygroma. I referred to the paper many times during the decision making process and
even after. I am glad that I was given detailed information. It was important to me to have as much straight-forward information as possible during
the decision making process.
My husband and I held hands from the moment the ultrasound started. We thought we were in for good news, but within minutes he was gripping my
hand tightly with fear and I was sweating profusely. When I got up following the CVS, tissue paper from the examination table was stuck to my naked
backside because I was soaked with fright and literally shaking. My husband and I had driven in separate cars since we were both planning to resume
a normal work day after the ultrasound. Instead we were at the maternal fetal medicine clinic for five hours. We were exhausted, confused, and
scared. We both took the rest of the day off from work and drove home in a fog of confusion, shock, and heartache.
I thought of Down syndrome immediately, because that was the chromosome problem that was most talked about in the pregnancy books I had been
reading. The birth frequency for Down syndrome is 1 in 1000 births, making this syndrome the most common chromosomal abnormality found in children
with karyotypic abnormalities who survive to birth. I also knew the risks of Down syndrome increased with advanced maternal age. I am thirty-seven
years old. They told me that there were other relatively common (although more lethal) chromosome problems the FISH test could detect including
Turner syndrome (Monosomy X), disorders of the Y chromosome, Trisomy 18, and Trisomy 13. The risk of detecting a cystic hygroma on first trimester
ultrasound screening is 1 in 285 which is 0.35%. I called my mother and tried to explain all of the new information we had learned. I got out a
calculator to calculate the risks of being the one to get this diagnosis and I saw the number on the calculator screen was 0.0035088. My shock and
disbelief were confirmed by the numbers. This was rare and I was never, ever expecting it.
I suppose my previous miscarriage helped me with the current situation more than I will ever know. I had already developed some personal
strategies to deal with the overwhelming feelings of grief that accompany pregnancy loss. I was somewhat prepared for the fact that things often
don't work out as we hope. I had also learned a lot from what doctors have termed our "slow fertility." It has taken us two years of patience to
get pregnant naturally. We have both been through the full infertility work-up and the rollercoaster of hope and despair that accompanies each
menstrual cycle when you've been trying to get pregnant for many months. I made my mind up a while ago that a realistic, but positive attitude is
the best way to deal with life's difficulties. Despite my previous experiences with the loss of control that surrounds pregnancy, nothing could have
prepared me for this. The painful complexity of this situation was beyond anything I'd ever experienced.
I was conflicted from the moment I learned of the cystic hygroma. I very much wanted this baby to be a part of our lives, but I have always
believed that I would not continue a pregnancy afflicted with a condition that would result in poor quality of life for my child. My husband and I
had briefly discussed our thoughts on this issue before we started trying to get pregnant. We were both in general agreement. Life is hard enough,
and to knowingly complicate a child's life with a severe disability from the moment of birth did not seem like the best choice to us. Once we
actually found ourselves in the position of needing to make this decision, I questioned everything I had previously believed. This was not
theoretical, this was our precious baby. My heart broke with the terrible options we had to choose between.
I began to gather information voraciously. We did not have a diagnosis yet, so in my uncertainty I read everything I could about the general
categories of cystic hygroma, chromosomal abnormalities, parenting children with special needs, cardiac malformations, pregnancy termination, and
carrying the pregnancy until the death or birth of the baby. Through this time I was still very much pregnant, with tender breasts and a swelling
lower belly, carrying a fetus that was ill but still alive. I tried to nurture her and shield her, the best I could, from the anxiety and sadness
that I could not escape. I barely ate. I rarely slept.
Because one of the options we were considering was pregnancy termination there was an element of secrecy that immediately surrounded our
situation. This is an issue that is very personal. This was our decision to make and ours alone and we carried that burden as bravely as we could.
I was totally honest with my doctors, my mother, and my husband. Later I also told the full story to my psychologist and the reverend at my church.
With everyone else, we decided that we would simply say, "There was a problem with the pregnancy and we lost the baby." This was such a difficult
and exhausting time for us that we shared limited information with others to allow us to focus on our own needs instead of the concerns of others.
This was a real time of bonding between me and my husband and my mother. I will never forget their strength and kindness.
We got the diagnosis quickly; just days after the CVS. Our baby had Turner syndrome. I felt the confused weight of tremendous relief that we had
a diagnosis, which meant I could know with more certainty what we were up against, and simultaneous gut-wrenching sadness that our baby could never
hope to develop normally. Ninety-nine percent of all fetuses with Turner syndrome die before birth by spontaneous miscarriage. The incidence of
Turner syndrome in live female births is believed to be 1 in 2500. We went for follow-up ultrasound two days later to learn that the cystic hygroma
was increasing in size relatively quickly and the generalized lymphedema was worse. Our doctor told us the chance of our particular baby living
until birth was 1 in 1000. The baby would likely die within weeks, but he did not know how long it would take for the in utero death to occur.
I found a 768 page textbook online, titled "Prenatal Diagnosis." The most helpful section for me, The Decision Making Process, describes
that "families need information and support so that they can make an informed decision about whether or not to continue a pregnancy in which a fetal
abnormality is found. Seldom is there a cure or effective treatment so families grapple with trying to decide which painful outcome is "less
worse." Decisions are made not only based on the medical facts surrounding the diagnosis, but also on how the diagnosis will impact (the couple
and the child)". (Mark I. Evans, Prenatal Diagnosis, McGraw Hill, 2006, page 532).
My sadness was so complicated. I really wanted this baby. I had patiently waited to become pregnant and I loved her deeply already. But, this
baby would not live. We could allow the baby to die naturally in my womb, but that might take many weeks. I had already done that with my previous
miscarriage at 9 weeks. The risks to my health with this pregnancy would increase as the baby grew because it would mean removing a larger fetus
from my body either by induction or dilation and evacuation. The perinatologists were very neutral and did not attempt to influence our decision in
any way. They provided a listening ear and reassured us about the path we were leaning toward. Once they realized that we intended to terminate the
pregnancy, they advised us to think first about my safety because the procedure could only be performed in an abortion clinic, not a hospital, and
first-trimester pregnancy terminations are slightly safer than second-trimester dilation and evacuations.
We chose to schedule a first-trimester termination procedure for many reasons. We felt that interrupting the pregnancy earlier would be the safest
option medically for me. First-trimester termination would avoid prolonging our baby's death and allow us to begin grieving her absence sooner.
Emotionally I did not want to wait many weeks to deliver a larger, dead fetus. As comforting as I know the vaginal birth of an intact baby can be
for others, it was not what my husband or I needed. An earlier procedure might also allow us precious time, at age thirty-seven, to get pregnant
again. We knew, from previous experience, that it would take time to grieve, heal, and hopefully become pregnant again. We had been trying now for
two years to conceive a child; it felt very important to us that we move on from this devastating prenatal diagnosis as quickly as we could.
I realize that other couples will make completely different decisions also based on love. In fact, in the state where we live, the predominant
religion rejects pregnancy termination. Many couples in our area, because of this religious culture, would not consider pregnancy termination as an
option and many would not receive a diagnosis until the time of live birth or stillbirth because they chose not to undergo prenatal screening. I
also understand that some women do not learn of their child's diagnosis until much later in the pregnancy because of testing limitations or the
timing of amniocentesis. I imagine that the bond between parents and the child-to-be only grows with time and that the decision making process is
further complicated by second-trimester diagnosis. Every situation deserves thoughtful individual consideration; there is no blanket answer that
could apply to every unique set of circumstances, even for the same couple. The best choice is a personal choice made with love and realistic
consideration of the options.
I went to the abortion clinic and met the staff and doctor before the procedure. I wanted to be sure I felt safe there. Building security was
high to keep protestors from disrupting patient care so I had to buzz in through sequentially locked doors. I signed the required consent that must
be signed in our state twenty-four hours in advance to prevent people from making rash decisions about pregnancy termination. There is a
"distinction between choosing to end a pregnancy for social reasons and making a decision to end a pregnancy because of the knowledge of the poor
prognosis" (Mark I. Evans, Prenatal Diagnosis, McGraw Hill, 2006, page 532). Despite this distinction I felt an immediate kinship (and, I must
admit, a simultaneous disdain) for the many other women from all walks of life at the abortion clinic. I looked into their eyes and smiled at them.
I wanted to let them know they were not alone. I realized they were making a difficult choice that was right for their situation and that I should
not judge any of them because I had not walked in their shoes. There were counselors at the clinic who explained alternative options including
adoption and the importance of birth control to prevent unwanted future pregnancies. I had never been in a clinic like this and I was completely
humbled. The protestors on the front lawn had no idea what I was going through.
On the day of the procedure my husband accompanied me to the clinic. There was a part of me that did not want him to join me, because I did not
want the pregnancy termination to be a part of our marriage. I wanted to do it without him so that we didn't have to remember it as a shared
experience. He insisted on being with me. I read a book and he read the newspaper to distract ourselves as we waited nervously side by side for
what was to come. It was surreal that we were there with our precious, wanted pregnancy. I wanted to scream. Instead I tried to be calm and I asked
many questions about what would be done to my body. I requested that our baby's remains be returned to us after the procedure. The clinic staff and
physician provided me with great care. I felt informed and educated about what was being done to my body. I had read before the procedure that a
fetus cannot feel pain until the third trimester so I did not worry that the baby would suffer.
They gave me nitrous oxide to relax me during the procedure and provided a cervical block to decrease pain. My legs were supported in saddle-like
supports. The medical assistant at my side told me what was happening and let me squeeze her hand. I breathed the gas in and out as calmly as I
could, but during the vacuum aspiration my body heaved in sobs as I acknowledged the terrible cruelty of what was happening to our baby. I was
wounded in every sense of the word. I was so conflicted by my maternal instinctive desire to nurture our baby and my equally strong impulse to
protect her from a severe diagnosis she received even before being born. My only solace is that all our baby knew of life was the warm comfort of
my uterus.
The recovery room was a place I will always remember. Very simple surroundings with nothing fancy. Just a bunch of old recliner chairs each with
a heating pad and blanket to comfort patients. My husband sat in recovery next to me and never let go of my hand. I was actually in significant
pain from the cramping and bleeding briskly at first. I was nauseated. The nurse brought me an antibiotic to prevent infection, ibuprofen to help
ease cramping, Methergine to stop bleeding, and Compazine for nausea. They monitored my vitals and bleeding. I tearfully searched my husband's
watery slate-blue eyes and found the solace I needed there. I breathed, it was all I could do. We did not speak, there were no words for what we
were going through.
"Life changes fast. In an instant life as you know it ends." This quote is paraphrased from Joan Didion's memoir, "The Year of Magical Thinking,"
about the unexpected death of her husband. I know what she means. It all happened so fast. Our life was irrevocably changed in an unwanted way. It
was the hardest situation I have ever been faced with. And now we know the fright that comes from having something rare and unexpected happen to us
- there is an inescapable fear that if it could happen once, it could happen again. The challenge ahead for us will be to face our fears and then
try to let them go.
The dread of all of this is that once you learn of a prenatal abnormality you must make a decision without full knowledge of what could possibly
lie ahead for your particular child. There are people with Turner syndrome who actually can do quite well in life, although, the harsh reality is
that 99% of conceptions die spontaneously in utero prior to birth. Of those who live, 17-45 % have cardiovascular malformations at birth
(Landin-Wilhelmsen et al, 2001). Women with Turner syndrome that survive to adolescence are almost universally infertile. Physical abnormalities
include short stature, lymphedema, broad chest, and webbed neck (Wikipedia). It seems to us that living with this syndrome would be a very difficult
life for a child emotionally and physically from the start.
There is always a great degree of uncertainty in life. The outcome of our particular baby's diagnosis was about as certain as you can get; the
doctors felt that 999 fetuses in 1000 would die in utero. Despite the relative certainty that our baby had to die one way or another, I have
struggled endlessly in the days since our pregnancy termination with the idea that I might have harmed the 1 in 1000 fetuses in her situation that
could have lived. Despite my struggle I feel that we made the best decision we could with information from the blood screening, chromosome analysis,
and ultrasound images. I also met with two perinatologists and an obstetrician and had serial ultrasounds in an attempt to be as certain as I could
be that we made an informed choice. It is not uncommon for couples to question whether the diagnosis could be wrong, and I actually requested a copy
of my medical record so that I could see with my own eyes the diagnosis confirmed on paper.
My heart breaks for anyone who has to make this type of difficult decision with less than complete information, or with less clarity regarding
prognosis and likely functional outcome. For instance it might be even more difficult for couples to decide how to care for a fetus with Down
syndrome knowing there could be a greater chance for a higher quality of life and survival to birth than a fetus with Turner syndrome. This
decision could be further affected by an echocardiogram and other later developments on ultrasound that could serve as imperfect indicators to help
assess likely future functioning and quality of life. Further testing would have the downside of prolonging the agonizing waiting period and
delaying a potential termination for the upside of additional precious information. Couples would need to individually weigh these costs and
benefits when deciding how best to proceed. I now realize, in a way that I never did before, that we will not find certainty or clear-cut answers
in life if our eyes are open to all of life's complexity. We simply need to make the best personal decisions we can and then forgive ourselves for
what we relinquish by choosing one option rather than another.
The afternoon following the termination procedure I tried to get up out of bed to do some things to keep my mind from grief, but my husband, who
was nursing me, sat at my bedside and tenderly begged me to "just heal", so I laid my head back against the pillow and rested fully, holding all the
sadness in my heart instead of trying to escape it.
I am grieving now. I didn't really have the time to grieve between the diagnosis and the pregnancy termination, but now it is hitting me in waves,
the way grief does:
~ I vividly remember being stunned to find progesterone suppository wrappings in the garbage, heart-breaking proof that just a few days before
I had been pregnant.
~ Small things cause me to break down and cry uncontrollably, like the fact that I will not get to relocate things in the kitchen to make room
for a high-chair.
~ We had to call my in-laws, cancel our dinner plans, and tell them the baby would die rather than the usual good news: "We're pregnant!"
~ I decided to prematurely finish the blanket I was knitting for the baby. What was the point of continuing on? Now I have a thin strip of
blanket tied up with a pretty pink ribbon that I will always save as a memory of the early, hopeful days of this pregnancy.
~ I have to face the fact that there will be no baby to wrap in a full sized baby-blanket. There will be no toddler, no kindergartner, no
adolescent, no adult woman.
~ Today I removed my bra, and my breasts no longer feel as heavy and tender as they did a few weeks ago. The pregnancy symptoms are fading
slowly.
~ I saw my obstetrician for follow-up from the termination. I am still bleeding from the procedure. He expects I will have a normal menstrual period within six weeks.
~ I have refused to have a glass of wine because I am irrationally not ready to stop "acting pregnant".
~ Our house is unnaturally full of beautiful flowers and cards from loved ones, not knowing how else to express their sorrow for our loss.
My husband is grieving too. He says that every hour of the day is a chore for him to get through, that he is unproductive at work and
exhausted. He says there is no reason to rush this process, that we should take our time to grieve our loss without hurry.
I am sad, hurt, and heartbroken. I feel little anger, self-pity, or bitterness. Life is wonderful and life is uncertain. I like it the way it is
because it's full of surprises, both good and bad. To date, this has been my life's worst heartache and we've had a lot of support to help us
through. Most notably, the home-cooked meals brought to us with love at a time when we could barely eat, let alone cook or plan a menu. Other
invaluable support included an appointment with my psychologist of many years. She knows me well and told me with sincere compassion that sometimes
the most loving acts can be the most cruel. She helped me confirm that I am a spiritual and ethical person, deeply conflicted by the choices we were
faced with. Because I had ethical and moral questions about our choice, I went to a church service at a church I hoped would support our personal
decision without judgment. I have never gone regularly to church, but I think I might go more often now because I feel welcome there. I called the
reverend and talked to him on the phone. My husband and I designed a private ceremony in the peaceful outdoor church courtyard and, after talking
further with the reverend together, shared readings and blessings to honor our baby.
We her. Her name is Grace. Maybe giving her a name is the single best thing we could have done. It allows me to talk about her by
name. I asked for her remains from the women's clinic so that I could show her the respect of a burial in the mossy wet ground under a tree beside
a stream in the mountains. My husband will join me tomorrow and we are going to place her lovingly into the ground together. These small things are
the only things I know to do to show that I loved her and that we tried to choose the least harm in a terrible situation based on our personal values.
I have looked for external validation from the few others who know about the pregnancy termination. I desperately wanted someone to tell me that
what we did was right; that I was still a good person despite choosing to end our pregnancy. Every single person involved in helping us has fully
supported our decision, but despite this I do not feel validated.
I have looked to others who faced a prenatal diagnosis in my struggle to reconcile our decision and learned that a 2002 literature review found
that 91-93% of pregnancies in the United States with a diagnosis of Down syndrome were terminated (Wikipedia). This number varies from study to
study and region to region, but it was helpful for me to have a general idea regarding the choices that others facing similar situations were making.
I found this website, www.aheartbreakingchoice.com, which posts personal stories lovingly
written by people who decided to interrupt their wanted pregnancies following prenatal diagnoses. I stayed up through the night reading the stories
and weeping. I no longer felt so alone. The stories comforted me. I realized the people making these tough decisions are doing the best they can in
a very difficult situation. Just like me, they are not bad or wrong; they are human. I also found support materials at
www.aplacetoremember.com - I ordered every pamphlet and booklet about the topic of
pregnancy termination and when the materials arrived a few days later in the mail I spent hours reading them.
I believe that the decision to terminate a pregnancy, especially with a prenatal diagnosis, is generally a decision to try to choose the least
harm for the parents, the siblings, and the affected unborn child. A decision that is this personal can only be validated by those directly
involved in the decision making process because each person and each couple arrives at a conclusion due to totally unique reasons and life
experiences. The couple must not look outside themselves for an answer; instead they must look within, because they will live alone and together
with the decision for the rest of their lives.
Terminating pregnancy is a complicated decision influenced by many factors; rarely is it based solely on prenatal diagnosis as ours was. I do not
believe that the decision to terminate a pregnancy is ever clearly right or wrong. I hope that I can learn to accept that life's struggles are more
often gray than black or white. My obstetrician told me that it is essential that pregnancy termination remain legal so that it can be safe. Twenty
million abortions currently occur annually worldwide in countries where abortion is illegal suggesting that women are not deterred from having an
abortion even if it is not a legal procedure (Wikipedia). Making abortion illegal just makes abortion less safe. I hope that our story might cause
some readers to reflect on the dogmatic view that ending life is always the wrong choice. Maybe abortion, as unpleasant as it is, has a time and a
place. I suggest that we let the person decide who is walking the struggle. Now I know deeply and personally that no one else can possibly decide
for her, no one.
I feel tremendous gratitude for the small things in life. Challenging times make you appreciate simple things. We have a roof over our heads,
plenty of food, and love. What more could we need? As far as what comes next, I do not know and at this point I barely care. I am so fatigued by
what I've been through that I just need time to recuperate. My husband needs time and space too. After two years of trying unsuccessfully to add a
child to our family I keep a set of files on infertility, adoption, and childlessness. When we learned of our pregnancy a few months ago I was so
excited that I would be able to throw the folders away, but I didn't. I was waiting for the birth of our child before discarding the files just in
case we were unlucky in pregnancy again. I'm glad I kept the information. It is good to know we have options if for some reason we aren't able to
conceive naturally or develop another problem that prevents us from having our own children. I must admit we are more than a little scared now about
what lies ahead for us. I am glad we have choices and are free to choose. As much as we wanted this child, life will go on in some different way
without Grace for all of us.
Because death is an unavoidable part of life it is essential to our human resilience to take time to develop a very personal spiritual framework
to help us individually understand death. Simply what a church might tell us happens after death is often not good enough, because it is not
personalized. Personalized beliefs can bring deep comfort in difficult times. My wish for our baby is that she become "not one thing, but all things"
(Mary Oliver, The Leaf and The Cloud). I am glad that the grave we are digging is ever so tiny; much smaller even than a baby sized grave. This is
a grave for our fetus, who never suffered. The suffering will instead be carried by those on earth who were touched by her life.
I hope that I will be able to forgive myself. I hope that I will find peace with life no matter the circumstances. I hope that I can begin to
believe in the possibility of a healthy baby as part of our future. I hope that our first named baby, Grace, will find comfort in the burial spot
that we lovingly chose for her. Tomorrow my husband and I will place her remains to rest on a soft bed of moss, the color of emeralds, beside a river
beneath a bending tree.
Deep wet moss and cool blue shadows
Beneath a bending fir,
And the purple solitude of mountains,
When only the dark owls stir-
Oh, there will come a day, a twilight,
When (you) shall sink to rest
In deep wet moss and cool blue shadows
Upon a mountain's breast,
And yield a body torn with passions,
And bruised with earthly scars,
To the cool oblivion of evening,
Of solitude and stars.
-Lew Sarett
