Saturday, September 29, 2007

Coping with pregnancy loss

Ernest Hemingway once boasted he could write a novel that was only six words long. Asked to prove it, he took a napkin and wrote, “For sale: baby shoes, never worn.”

The anecdote may be apocryphal, but the sentiment speaks volumes about pregnancy loss, an emotionally devastating phenomenon that afflicts hundreds of thousands of American women yearly.

These are Clevelanders’ stories.

Hildee and Gary Weiss were married four-and-a-half years when Hildee became pregnant with their first child in 1994. At 12 weeks, she suffered a miscarriage. The emotional fallout, they admit, was devastating.

Hildee and Gary went in for what they thought would be a routine 12-week exam. Following an ultrasound, the doctor suggested that Hildee see a radiologist. When the Weisses heard the words “Your fetus isn’t viable,” they were shocked.

An arrangement for a D&C was made that same day.

Breaking the news to each of their parents, who knew that Hildee was pregnant, was equally difficult. Hildee’s parents, Zifra and Jack Zwick, live in Detroit; Gary’s parents are Judy and Morry Weiss of Cleveland.

Hildee’s married older brother and his wife had just given birth in Detroit to a healthy baby several days prior to Hildee’s loss. The hardest thing for Hildee and Gary was attending the baby naming. Returning the maternity clothes she bought was another hurdle.

Because it was Hildee’s first pregnancy, she assumed nothing would go wrong. She describes a whole range of emotions, including the thought that this might have been her only chance to get pregnant. In a separate telephone interview, Gary admits,
“You wonder if you will ever have a child and if it’s ever going to happen to you.”

Self-blame and guilt are also common. Hildee asked herself,
“What did I do wrong? Did I eat something wrong? Did I exercise too much? You blame yourself and blame your body for rejecting this baby.”

There was no medical reason given for the pregnancy loss, which the doctor described as a “fluke.” She also told Hildee that what happened was common and unlikely to happen again.

But having suffered the loss raised her level of anxiety throughout all her subsequent pregnancies. Each time Hildee went in for her first ultrasound test, Gary always accompanied her and held her hand.

Hildee has had five successful pregnancies and three losses. The second and third losses, at eight weeks and five weeks respectively, were natural miscarriages at home.

Having healthy children between the losses made the losses easier to deal with for Gary.

Pregnancy loss can drive a couple apart or bring them closer together, say psychologists. It brought the Weisses closer together. “It was the first difficult thing we went through together,” says Gary.

“You come to realize quickly that having a baby isn’t always as simple as an act of God. All it takes is just one little thing that doesn’t happen correctly, and it causes a miscarriage.”

Hildee characterizes the trauma as a loss of innocence. While it takes about a month to recover physically, emotional recovery takes much longer.

Hildee’s first pregnancy loss occurred 13 years ago; the most recent, eight years ago. Yet it is still something she thinks about and feels sad about. “You move on and move forward with your life, but you never get over a loss,” she says.

The Weisses did not seek the help of a professional counselor or therapist. Nor did they know of or join any support groups at the time.

But Hildee had a strong support system of family and friends. Hearing from friends who suffered losses and then went on to have healthy children was very comforting, she admits.

The Weisses, members of Green Road Synagogue and Young Israel of Greater Cleveland, are Orthodox, and their faith in God remained unshaken.

In her book How to Survive the Loss of a Child, author Catherine M. Sanders, Ph.D., writes that friends and family have a hard time imagining grief over a baby you never saw or that you held only briefly.

Hildee agrees with Sanders that “our society tends to minimize and overlook the effects of miscarriage. Yet it doesn’t have to be born for you to bond with it,” says Hildee.
“It is a loss, and you have to grieve it the way you would grieve any loss.”

Pregnancy-loss experts concur that memorializing the loss is extremely important. This might involve a memorial service, bereavement support, planting a tree or a garden, or holding a balloon-release ceremony. Hildee suggests making a donation to charity as another way to acknowledge the loss.

Oct. 15 is National Pregnancy and Infant Loss Remembrance Day. Candlelight vigils across the nation unite people in their grief (online at ).

Hildee feels her losses have made her a stronger woman and hopefully a better mother, as well as more sensitive and empathetic as a person. As a freelance writer and now a pregnancy loss-awareness activist, she has been able to reach out to other people.

Hannah Stone, (Hildee’s pen name) is the author of two self-published books on pregnancy loss. Forever Our Angels deals with personal stories of pregnancy loss. A sequel, Remembering Our Angels, includes individual stories of coping with and healing from a pregnancy loss ( ).

Hildee wrote her books because she wanted to offer a resource to grieving parents to have, where they can read and identify with the stories of other grieving parents and know that they are not alone.

Hildee, 38, and Gary, 45, have been married 18 years. They are the parents of Yaffa, 12; Seth, 11; Miriam, 9-1/2; Yonatan, 7; and Liat, 5.

“All five children are precious to me,” says Hildee. But thoughts of her unborn children continue to surface, particularly on the anniversaries of her miscarriages or around the time when they were due.

What is the most important advice Hildee would give to couples who experience the trauma of pregnancy loss?

“Find support in one another, talk to each other, and be there for each other. While the mother is bearing the brunt physically and emotionally, the husband is just as invested in pregnancy, and I think people lose sight of that.”

The next step, she says, is to find support from family, friends and clergy. Joining a support group where the couple can talk to other grieving parents and share experiences is beneficial.
“It’s so important to know you’re not alone with the loss.”

According to the March of Dimes, as many as 50% of all pregnancies end in miscarriage, most often before a women misses a menstrual period or even knows she’s pregnant. About 15% of recognized pregnancies will end in miscarriage.

Early-pregnancy loss is very common, says Dr. Daniel J. Aronson, an OB/GYN specialist in private practice for 22 years.

Human reproduction is very inefficient, he explains. In actuality, 40-45% of pregnancies result in miscarriage, he states. But only one-third of those are recognized and confirmed with a pregnancy test. The other two thirds go undetected.

If someone gets to seven or eight weeks from their last cycle and a strong heartbeat is heard, there is about a 95% chance of not experiencing pregnancy loss, notes Aronson. Recurrent miscarriage, defined as three consecutive losses, affects up to 1% of the population, he adds. The most common cause is hormonal dysfunction, usually an inadequate production of progesterone, the hormone which promotes pregnancy.

A pregnancy loss of up to 20 weeks is called a miscarriage, the most common form of pregnancy loss. Other types of pregnancy loss are stillbirth, defined as a miscarriage that occurs after 20 weeks of pregnancy. Neonatal death refers to the loss of the baby within the first month of life. Tubal or ectopic pregnancy occurs outside the uterus, most commonly in the fallopian tube.

Until a woman has two to three pregnancy losses, she is probably not at significant risk for subsequent loss, explains Aronson. At that point, they can seek consultation from the gynecologist and, in many cases, identify a rectifiable reason and prevent subsequent loss. But the risk for miscarriage in the Jewish community is no greater than in the general community, he adds.

Having a baby is probably the most important event in a woman’s life, says Aronson. Informing her that her pregnancy is not going to be successful is very difficult, he admits. Nevertheless, “you have to underscore that her chances still remain very high that she will experience a successful pregnancy afterward, and we try to emphasize that.”

The greatest hurdle for parents in dealing with the trauma of pregnancy loss, Aronson adds, is when they feel they may have inflicted the damage themselves. They have to be reassured that people do not inflict miscarriages upon themselves, even if they try to do so by using drugs.

Years ago, many women didn’t find out they were pregnant until they had suffered a miscarriage. Today, with early testing at home or in a lab, a woman can find out if she’s pregnant five-and-a-half weeks after her first cycle. This early knowledge and subsequent early bonding with the fetus, Aronson agrees, can make dealing with pregnancy loss more traumatic than in the past.

The advice he would give parents suffering from the devastation of pregnancy loss is that “in the vast majority of cases, working as a team with your gynecologist, you will be able to achieve a healthy pregnancy.”

“It ain’t fair you died so young, like a story that had just begun”

From Amy’s favorite song, “Who’d You Be Today” by Kenny Chesney

In 2003, “Amy” was pregnant with her third child. A bad case of flu triggered early labor at 20 weeks. Amy went into the hospital, where they were able to stop the contractions. Due to a high fever, she stayed for a week and was put on antibiotics. Amniocentesis established that the baby was fine, but Amy started to bleed and was placed on bed rest for one month under close observation.

At 25 weeks, Amy received the shocking news that the amniotic fluid was completely gone and the pregnancy had to be terminated. The baby was delivered naturally through induced labor. It was a boy.

“I was completely devastated,” says Amy.
“It’s something you never get over.”

Following the delivery, Amy and her husband “Bill” were able to hold the baby and take as much time as they needed to say good-bye. The hospital staff created a memory box with pictures, footprints, a baby blanket and hat.

It took Amy several years to open that box. Amy wears a bracelet she had made with the baby’s footprints and date on it.

A burial and a stone setting were arranged by a family member. Amy was unable physically and emotionally to attend the burial, but she and her husband were at the stone setting.

Amy’s emotions ran the gamut. She felt guilty because her husband wasn’t sure at first that he wanted another child, and she had wanted a third for a long time. They had gone on a trip just prior to the loss, and when she got sick with the flu, she blamed herself for going away.

The most emotional time for Bill was right after the delivery when they were allowed to hold the baby. “Everybody left the room, and it was just the two of us and the baby. I didn’t realize how powerful that was going to be,” he says.

The trauma of pregnancy loss did not change their relationship nor create conflict, says Amy.
“If anything, it makes you appreciate what you have because you can see in a heartbeat that anything can happen.”

Amy later sought the help of a professional therapist, but it didn’t help. She tried to attend a support group at Hillcrest, but the hospital setting unnerved her. While she talked about it with friends, she kept it mostly to herself. She also kept a journal.

Amy and Bill are Reform Jews. Following the loss, Amy became less religious. “How could God do this to me?” she agonized. For Bill, faith did not enter the picture.

Every year Amy and Bill light a candle on their baby’s yahrzeit at Yom Kippur. They visit the gravesite on Mother’s Day and the anniversary of the baby’s date of delivery. Amy visits the gravesite more often than Bill, which makes it harder for her at times. “It’s the only closeness I have left,” she says, with a heavy and palpable sadness.

The loss also was hard for Amy’s other two children, who had made a list of baby names before she went into the hospital. After Amy came home, the older child made a poster that said “Don’t worry; you still have us.” The younger child has also been to the cemetery with Amy.

It has been four years since their baby died. While Bill says he has come to terms with the loss, the hardest thing for him is to see that his wife has not.

Amy keeps a picture of the ultrasound in her pillowcase. “Every time I make the bed, I am aware that she is thinking about it every night,” says Bill.

Amy thinks having another baby would have made it a lot easier for her. Given their ages (Amy is 38, Bill, 40), another child is unlikely. Amy’s first two pregnancies were also high-risk, requiring bed rest and C-sections.

Amy realizes that wanting another child makes it harder for her to accept the loss. It is still difficult, she admits, for her to be near a pregnant woman; nor can she look at newborn babies.

The loss has made her closer to her other children and appreciate them more. “Even when they fight,” she says, smiling.

The death of a baby is even more hidden because it violates our expectations. And when we hear about the death of a baby, many of us do not recognize the depth of the loss to the parents.

Deborah L. Davis, Ph.D., author of From Empty Cradle, Broken Heart

Dr. Sara Goldman is a four-time survivor of pregnancy loss. Her first loss, which was also her first pregnancy, ended in miscarriage in the first trimester in 1992.

The Goldmans were disappointed but certain Sara would get pregnant again.

Following the birth of two healthy children, Sara suffered her second pregnancy loss in the second trimester in 1999.

A psychiatrist in practice with Psychological & Behavioral Consultants in Beachwood, Sara was 18 weeks pregnant when she went to her OB and was told there was no heartbeat. She was in her second year of residency at University Hospitals at the time and under a lot of pressure.

Sara has an incompetent cervix. With each pregnancy, she had a cerclage, a stitch around the cervix. The second trimester loss occurred after this obstetric procedure. “To have the procedure which is supposed to guarantee I could carry the baby and then have the baby die despite that was pretty horrible,” recalls Sara.

One year later, their third child was born.

Sara suffered another first-trimester miscarriage in 2003. Following a lengthy time trying to conceive, including expensive and time-consuming infertility treatments, Sara became pregnant in 2004. At 18 weeks, she lost the baby.

Sara’s husband Alan, 38, describes it as the worst loss and one with lasting consequences, as it is doubtful that Sara, also 38, will become pregnant again.

The recommended procedure following the couple’s fourth loss was to deliver the baby naturally through induced labor. The nurse took pictures; Sara held him and said good-bye. She describes it as a much more healing and peaceful experience. ”It really changed the way I was able to deal with loss afterwards,” she says.

Jewish law requires the burial of a fetus that is delivered naturally. Alan had to make arrangements with the funeral home, talk about the cemetery, a burial marker, and giving the baby a name.

That was the hardest part for him. The Goldmans have not visited the gravesite (a special part of the cemetery is reserved for these kinds of burials), but knowing it’s there is comforting to both. While Sara has been unable to look at pictures of her lost child, she acknowledges the importance of such keepsakes and mementos.

The Goldmans named the baby Matanya Yosef. Three of Sara’s poems dedicated to their deceased son are included in Hildee’s book. One of them is called
“For Matanya Yosef, who died before he had the chance to live.”

All of the losses were boys. The Goldmans have three sons: Schmuel, 15, Bentzion, 11-1/2, and Uriel, 7.

Unlike her second pregnancy loss, which they kept secret, the Goldmans were more open about the last one. This, too, was more healing, they say. The response from their shul, Young Israel of Cleveland; Rabbi Naphtali Burnstein; and their children’s school, Fuchs Mizrachi, was an outpouring of kindness. People made meals, sent cards, and created a journal of wishes and thoughts.

The medical community was extremely supportive, notes Sara, including her obstetrician, Dr. Robert Kiwi, a specialist in high-risk pregnancies.

Alan is Sara’s biggest supporter. “He’s the one I turn to for all the help,” she says.

Sara wrote the introduction to Hildee’s first book. In it, she likens the emotional reaction to pregnancy loss to Elisabeth Kubler-Ross’s five stages of grieving: denial, anger, bargaining, depression and acceptance.

The stages aren’t hard and fast; in grieving, people move back and forth between the different stages, she explains. For Sara, who continues to grieve three years later, there has been no full acceptance.

Living in the religious community, where larger families are the norm, also has profound implications for the Goldmans.

After the last loss, it took Sara several years before she could even talk to a pregnant woman. She’s doing much better now, she says, but her feelings remain tinged with sadness and, at times, anger.

For a long time, Sara remained angry at God. She now accepts that there is a reason for everything and that each soul has a purpose. Alan is still wrestling with the issue. “I don’t expect ever not to,” he admits.

For couples who experience the trauma of pregnancy loss, Sara says, “Reach out. There’s help out there.”

Casey Toohig is a co-leader of “Love Lives On,” a support group for pregnancy loss at Hillcrest Hospital. An R.N. and LPCC and now a professional counselor in private practice, Toohig has been involved for 12 of the group’s 15 years.

“We felt there was a need for the couples who had had a loss to be able to connect with each other,” says Toohig in a phone interview. The healing comes from the couples themselves, she explains.

The biggest issue women have to deal with is the actual death of their baby, Toohig says. Many of them feel guilty and that their bodies have failed them. They also feel that it is very unfair. Compounding the difficulty is the fact that they are surrounded by people who are having babies.

The men will acknowledge that they definitely feel the loss, but they deal with it differently. One husband said,
“I don’t know if we can get pregnant ever again, because I can’t imagine the look on my wife’s face.”

“It breaks their hearts to see their wives suffer that way,” says Toohig.

Toohig acknowledges that medical and mental-health professionals have come a long way toward recognizing the need to deal openly with pregnancy loss.

The best advice Toohig would give a couple dealing with pregnancy loss is to continue talking to each other and to respect each other’s way of grieving. It is also important, she stresses, to give yourself time to grieve.

Some people never get over their grief, even years later. That’s called complicated grief and needs professional help, explains Toohig. Usually it’s not just grief but other issues at play, she adds. “It’s not that you’re all better after so many years, but you should be moving forward.”

Websites of Jewish pregnancy loss support groups:

Area hospital pregnancy loss support groups:

Hillcrest Hospital, a Cleveland Clinic Hospital - “Love Lives On” meets third Thursday of every month at 7:30 p.m. in the Ross Boardroom at Hillcrest Hospital. Contact Kathy Yoder, manager of childbirth education, at 440-312-8841.

Rainbow Babies & Children’s Hospital at University Hospitals - P.E.N.D. (Parents Experiencing Neo-Natal Death), for parents who have experienced a stillborn or neo-natal death, meets first Monday of every month at Rainbow Babies & Children’s Hospital. 216-844-3754.

Metro Health n no formal support group. For prenatal bereavement information, call Dan Rossbach, director of pastoral care, at 216-778-4663.

Fairview Hospital, a Cleveland Clinic Hospital - F.E.E.L (Families Experiencing Early Loss), a support group for parents who have lost babies, helps parents who have experienced a miscarriage, had stillbirth, or experienced the loss of a baby shortly after birth. Meets first Thursday of the month, 7:30-9 p.m., in meeting room B at Fairview Hospital. 216-476-6965.

Marymount Hospital, a Cleveland Clinic Hospital - offers one-on-one counseling help with infant loss. 216-587-8998, ext. 2465.


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