Coping with the emotional toil of fertility problems

A one-of-a-kind Jerusalem voluntary organization helps couples deal with the stresses of IVF, miscarriage and similar life events.

By JUDY SIEGEL-ITZKOVICH
In vitro fertilization 370 (photo credit: REUTERS/Kacper Pempel)
In vitro fertilization 370
(photo credit: REUTERS/Kacper Pempel)
It used to be thought that one out of 10 couples suffered from fertility problems that prevent them from achieving a pregnancy without medical help – but now the true figure is estimated to be one out of six. Either environmental influences have made it harder to get pregnant, or there is more awareness and openness – or both.
Having babies is regarded in Israeli society as such a supreme value that every general hospital in the country has its own in-vitro fertilization unit – and the basket of health services provided by the health funds with state subsidies includes everything needed for two healthy babies to any woman who wants them, whether married or single, up to the age of 45. Some 20,000 IVF cycles to produce pregnancies are carried out in Israel each year.
Thus it is surprising that until last year, there wasn’t a single voluntary organization that provided emotional support for couples with “fertility challenges” – until Mercaz Panim opened in Jerusalem.
Rachel Hain, a Jerusalem social worker who came on aliya with her family from Boston at the age of 13, founded the organization after personally feeling the need for it. Suffering from polycystic ovary syndrome, she was told by her doctor after she got married 14 years ago that she was “not ovulating.” Today, at the age of 38, she is the mother of eight children – four girls and four boys – aged five months to 11 years, including a set of triplets.
“I went to Pelech High School for Girls in Jerusalem and served in the Israel Defense Forces as a teacher of soldiers. I married my husband, himself a former immigrant from New Jersey, who is today a medical resident in otolaryngology at Kaplan Medical Center,” she said in an interview with The Jerusalem Post, “and I received my degree in social work at Bar-Ilan University.”
But a desired first pregnancy failed to occur, and her gynecologist gave her hormone pills to regulate her menstrual period. That was enough to make her fertile. “Fortunately, it worked very fast,” she said. After she had several children, including the triplets, her ovulation became regular and she no longer needed hormones to get pregnant.
“But I felt all the time that there was a lack of emotional support. I was treated like a medical problem as we went through our fertility challenge, but the emotional side of it was ignored by the doctors and even the nurses,” she recalled. “I witnessed what other couples went through. There is such a void. I knew that the problems of coping emotionally with fertility problems were not being addressed.”
After a while, she learned that there were various support groups for fertility challenges (the term she prefers to use), such as one run by Dr. Zvia Berman in Jerusalem, but these offered discussions, not active therapy. Hain asked the Puah Institute for Medicine and Halacha, an Orthodox organization that focuses on Jewish law, obstetrics, gynecology and fertility.
“I asked to be named an in-house social worker. They sent me to be a volunteer at Jerusalem’s Bikur Cholim Hospital, but I felt I needed more training to be useful,” she says.
Taking hormones to ripen ova and undergo IVF, Hain said, “is not easy. It has not only difficult physical, but also emotional effects. You go to a few dozen different people who must be informed about your most intimate details, not to mention other patients in the IVF clinic’s waiting room. It’s important to receive emotional support during this long, complicated and frustrating process – and a family member usually can’t provide it.”
One day in February of last year, while having coffee with her husband in a Jerusalem cafe, Hain suddenly realized that she had to set up an organization that was not available when they needed it at the beginning of their marriage.
“We had seven little children, and I was very busy with my life, but I felt ready to do it. It was an idea that had ripened,” she explained. First she took mind/body courses and a “spinning” (speed bicycling) course at the Wingate Institute for Physical Education near Netanya. Later she underwent more relevant training.
She found a place for the registered nonprofit organization at the Swan fitness and wellness center at 43 Rehov Emek Refaim in the capital’s German Colony.
“We have about 20 psychologists, social workers, therapists who teach guided imagery, personal trainers, holistic massage therapists and yoga teachers,” she said. “All of them know how to help women one-on-one not only with fertility challenges but also miscarriage, fetal loss, babies who die soon after their births and other tragedies,” said Hain.
“The couples and individual women who come to us are not only religious Jews,” stressed Hain. “There are secular and unmarried women as well. And although we have not yet had Arab clients, we have a Jewish nurse at Hadassah University Medical Center on Mount Scopus who speaks fluent Arabic and would be glad to assist Arabs as well. Our doors are open to all. Those who need help are not only from Jerusalem but from other parts of the country. If people outside can’t get to Jerusalem for sessions, we have contact people in other places who can help.”
She named the center Mercaz Panim, implying internal needs and help. “I didn’t want to call it a ‘Center for Emotional Help to the Infertile.’ That would be off-putting and not give the whole picture. Its existence has not been advertised because of its small, NIS 300,000 annual budget, which is funded by private Israeli donors and minimal charges. The center conducts an annual fundraising event at Swan, and advocates of the organization – not necessarily people with fertility problems, run as a group in the Jerusalem Marathon and get sponsors. It doesn’t run an annual dinner to raise funds, but it has a supportive board of directors.”
The news spreads by word of mouth. “We don’t want people to hear of us because there are neon lights,” said Hain.
The organization has not yet had the time to seek foreign donors, but it would be interested in funding from the health funds whose members are going through IVF and related procedures, as well as other possible sources of financial help such as pharmaceutical companies that sell fertility drugs.
“We first ran pilot programs at Bikur Cholim Hospital, Puah and Hadassah on Mount Scopus. Now we have a package that charges only NIS 60 for initial sessions. The first time at least, we ask the women to come in with their partner. More sessions are available if necessary at very reasonable cost. The average person who comes to Mercaz Panim attends three to six sessions.”
THE MOST important need people with fertility challenges have, Hain said, is to feel good about themselves, to feel empowered. Such women have needles stuck into them from all directions. In almost half of cases, the male partner is “responsible” for the infertility problem; in the rest, it is the woman’s problem, or both. The oldest woman who came for emotional help was 52 years of age and had tried to have a baby through surrogacy, but it didn’t succeed.
Sometimes, she added, “women whose husbands have problems with their sperm ‘cover up’ for them so they are not embarrassed and tell others that they are the ones. This is very difficult to cope with. We provide emotional tools for other life crises as well. The divorce rate of people with fertility challenges is higher than in the general population. Often, such couples have trouble communicating and supporting each other.”
Many individuals, Hain continues, “define themselves by their fertility. They feel they are in the waiting room of life. Until they have a child, they feel they can’t accomplish other important things. Sometimes husbands and wives are so overcome with the emotional burden that they’re unable to ask each other the simple question, ‘How are you dealing with this?’ We help them. In the many years I have been involved in the subject, only two men have independently contacted me to get help in coping with fertility problems,” she said.
The center does not give medical advice on how to get pregnant, but on how “to feel better. We don’t give advice about procedures for applying for adoption, but our experts can talk about it coping with the procedure. We have cases of couples with secondary infertility who have one child or more and find they can’t have more, making them very frustrated. If all attempts fail, we speak to them about fully enjoying the children they have. These problems touch everything in their lives,” said Hain.
The center’s founder and director said that after dealing with hundreds of couples, her medical knowledge is extensive. But she doesn’t stress this or consult with her physician husband, who is studying a totally different specialty. “My husband supports the idea and believes in what I’m doing. But I get supervision from other specialists,” she said.
Having had fertility challenges herself, she “can address what couples go through. But I don’t discuss my own experiences unless somebody asks about them. One doesn’t have to go through IVF yourself to be empathetic. If they feel you’re speaking their language, they will open up to you.”
She is always careful not to try to “encourage” childless people by giving examples of other couples who succeeded.
“They don’t need to hear this. They often say they feel the whole world is pregnant except for them. I myself was lucky, but I got a glimpse of the problems. I understand the desperation. There is such a void. But being empathetic does not require my reliving my challenge.”
While Hain is busy enough with her family and job, she believes that additional branches of Mercaz Panim should be established, as the organization – which has a two-week waiting list for consultation in Jerusalem – is very busy.
“I don’t know of any other non-profit organization in the world like this. But I don’t know if I could do it on a national scale. I’m in touch with all IVF units at Jerusalem hospitals, but not with the more than 20 others around the country.”
She would like to see state backing for the center. “People with fertility challenges are today such a big population. There is a significant need for emotional support. I feel so good when a woman comes to me and says she has had problems for nine years but nobody had ever spoken to her about this distress. It was all kept secret.”
In another five or 10 years, concluded Hain, “I think we will grow tremendously. I hope emotional support will automatically be part of fertility care.”