Caregivers

Understanding and Coping with the Losses of Infertility
Jan DeMasters, PhD, RN

Millions of couples experience infertility - difficulty in conceiving and/or carrying a pregnancy. It is estimated that at least one in every six couples of reproductive age will find that having the child they long for may be more difficult than they expected.

Infertility is medically defined as 1) the inability to conceive after 12 months of trying [6 months if the woman is over age 35], or, 2) the inability to carry a pregnancy to term with the experience of three successive miscarriages. Causes of infertility are evenly split between male only, female only, and those that involve problems in both partners. Five to ten percent of cases are considered idiopathic (without any identifiable cause). This category is perhaps the hardest to cope with because when a cause cannot be named, couples and their physicians do not know what to fix to make things right.

An interesting note in the rapidly advancing science of treating infertility is that what we consider "reproductive age" is changing. With Assisted Reproductive Technologies (ART), we are now able to help women in their late thirties and even early forties have their own biological child, when only a few years ago they were considered too old to achieve pregnancy. Science has even lowered the fear factor for older women of having a child with genetic problems, such as Downs Syndrome, through the use of Preimplantation Genetic Diagnosis (PGD).

With growing numbers of donor egg and donor embryo programs across the country, even women for whom having a biological child is impossible due to decreased ovarian function, premature ovarian failure, or even perimenopause, can experience pregnancy and childbirth. Egg or embryo donors can be anonymous or known to the recipient, and these pregnancies fall under the category of "third party parenting." By expanding those who are vested in the process of the pregnancy, we also expand the number of people who may grieve a failed cycle or subsequent pregnancy loss.

Fortunately, medical science offers great hope to infertile couples today, and more than one half of infertile couples are ultimately successful in having a child. Even for those lucky ones, however, the journey can be a long roller coaster ride of skyrocketing hope, periods of great anxiety, and sometimes devastating loss.

Infertility is sometimes called "the tragedy where nothing happens." The truth is that something does happen. Something happens when a man is told that he will never have his own biological child. Something happens in every month that ends in a period for women trying to conceive, every hard-fought pregnancy that ends in a miscarriage, and every time that dreams of a child must be postponed because of financial costs. Something happens every time the infertile couple surrenders their dream of being a family.

The losses of infertility affect all domains of life - interpersonal relationships with spouse, family, friends, co-workers, and within our society in general. It has a physical, emotional, and spiritual cost for infertile couples to reconcile their wanting to make each other a parent, providing grandchildren for their own parents and participating in the normalcy of "family" in our culture. Many infertile couples, and most especially women, tell me that they feel surrounded by pregnant women and families with babies. Each time they see an expectant mother or a woman with an infant it fills them with fear that they will never have that fulfillment themselves - and that hurt is immeasurable.

The losses of infertility can begin very early in the diagnosis and treatment. One of the earliest losses for an infertile couple can be the diagnosis of infertility itself. After months of trying to conceive, a woman is usually the first to broach the subject with her physician. Acknowledging the need for help is anxiety provoking in itself. Once the process begins, testing usually initiates with a semen analysis that may sometimes reveal a devasting diagnosis such as azoospermia (no sperm in the ejaculate), blocked fallopian tubes, or ovarian failure (premature menopause), all of which dramatically reduce the probabilities of having a child. Other times, even an in-depth analysis reveals no identifiable cause and physician and patient are left to make their best guess on how to proceed.

For couples that move forward from diagnostics to infertility treatment, a cancelled cycle can be a demoralizing experience. Wherever they are on the continuum of treatment, from simple and less invasive to high tech and complicated, hitting an immoveable obstacle like a cycle cancellation can be costly in terms of time, money, physical resources and frustration. Likewise, an unsuccessful treatment cycle is a heartbreaking reminder that the child they long far is so close and yet so far away. When undergoing IVF (In Vitro Fertilization), couples often see the embryos created in the treatment process and mourn the loss of those babies that they saw for only a fleeting moment, but loved and cherished just the same.

When treatment is successful and a pregnancy is achieved, many infertile couples are in shock and disbelief. After months or even years of trying, what proves they truly are pregnant? A test strip from the drug store? Numbers from a blood test? Sometimes couples zoom from "I can't be pregnant" to picking out colleges for the child they carry in a matter of hours! Every couple is different and every experience unique. For infertile women undergoing IVF treatment, medications they are taking, particularly progesterone, mimic the early signs of pregnancy, which can reap havoc with their state of mind in the days preceding their pregnancy test. Clients I counsel every day tell me that this can be the most surreal experience in their battle with infertility.

Early in the pregnancy, many couples debate the pros and cons of revealing the pregnancy to friends and family and risking having to tell everyone if they miscarry early on versus hiding the pregnancy until they reach the safety of their second trimester. Particularly for couples who have suffered early miscarriage in previous treatment cycles, this decision is a difficult one. If they share that they are pregnant, they must then tell the story over and over that they have lost this child in a miscarriage, and that can be both exhausting and heart wrenching.

For couples who have monitored every body symptom, taken their temperature every day for weeks, and timed intercourse or injected their body with powerful infertility drugs and lived through the rigors of every-other-day vaginal ultrasounds and blood work, an early pregnancy loss is often accompanied by much guilt - "would have," "should have," "could have," and "if only" can be devastating words that drive you crazy in second guessing what went wrong, when the truth is that early pregnancy losses are most often related to factors beyond the control of the infertile couple.

The second trimester of pregnancy is often called the "honeymoon of pregnancy." Morning sickness (even with twins) eases, fatigue is replaced by a new energy, and couples begin to feel "safe" as they pass that 12-week boundary where miscarriages happen less frequently. The child becomes more real to fathers as they see their wife's shape begin to change, ultrasounds show that there really is a baby in there, and movement of the child can be felt externally. They have seen and heard the heartbeat for many weeks, but now is seems like there is a real person inside the mother.

When a mid to late-term pregnancy loss occurs, the hospital procedures are much more medical in nature, and the loss is also more tangible to outsiders. Often more people are connected with the pregnancy, including grandparents, friends, neighbors and co-workers. There is a legitimacy to the loss at this time in pregnancy that couples who have suffered an early miscarriage do not experience, but often even mid to late-term pregnancy loss is met with a feeling of "buck up and move on" long before the couple are ready to move beyond their pain. Society is often uncomfortable with the pain of pregnancy loss, and unfortunately the sentiment that "your pain bothers me, so please get back to your old self as fast as you can," is very hard to deal with for grieving couples.

Losing a child in the early days, weeks or months of life is like having your heart ripped out of your chest. For infertile couples, the cruelty and acuteness of losing the tiny soul they have struggled so to bring into the world is compounded by the fear that this this fleeting experience of parenthood may be all that they will ever know. Expressions like, "You can try again" bring little solace to infertile men and women who are afraid that, for a multitude of reasons, this may be their only glimpse of having a family.

Often, by the time they make it to delivery, infertile couples start to finally feel safe. There is a status in having made it that far - a feeling that they have defeated infertility. It is harder to say goodbye when they have held their child, and particularly for men, the reality of loss is cold and harsh. There is also a longer recovery period for women who reach this stage. The physical demands of delivery may have left her poorly equipped for the process of saying goodbye to her child.

In dealing with the losses of infertility, the first step is for the individual to identify how they cope. I have heard it said that - men analyze and women cry. This is not my experience in 20 years of helping couples deal with the pain of loss. It's not about gender, it's about coping styles. There are two main types of copers - Intellectual Coping is when "thinking affects feelings" and Emotional Coping is when "feelings affect thinking."

For Intellectual Coping, having a strategy or plan is essential - they need to know what path they will take to survive their loss. Using avoidance is not a bad thing in the initial shock phase of loss. In fact, it is a survival mechanism. Surrounding themselves with a circle of support - people who genuinely have the grieving couple's best interest at heart is also key. Having a memorial - a physical place or touch stone where the intellectual coper can know that they can go; a memory box where feelings can reside with remembrances of the child that was lost - even if all it can hold is a small ultrasound picture or a lock of hair. I do suggest to my clients that they consider stones, a marker, a brick at the Angel Walk, etc., rather than a living memorial like a tree. I have seen couples devastated when a tree was taken down by an ice storm or when they have had to move to a different city and leave a piece of their lives behind for others to tend. Also for the Intellecual Coper, support groups where they can see other "survivors" of loss is very helpful.

Emotional Copers need to deal with their feelings before they can move forward in healing. Externalizing hurt, loss, fear, etc., can help. Journaling, by hand or on computer, is very therapeutic. Physical release, such as walking or exercising, is also helpful. Meditation, relaxation techniques and guided imagery can help restore balance and renew energy for Emotional Copers who are drained by the overpowering crush of emotion that follows loss. For the Emotional Coper, support groups can be a source of activism and facilitate the return of a sense of control over their lives by helping others who have suffered a similar loss.

There is no one right way to cope with the losses of infertility. Every couple, every individual, must find their own path to healing. It is important, however, to know that there is help along the way. Share has a wealth of resources for grieving couples, including support groups, literature and reading suggestions, assistance with establishing a memorial, and referrals for professional help when needed. Most importantly, in my 20 years of working with Share, I have seen the love that abides there and the understanding that comes from people who have lived the life-changing experience of loss. The losses of infertility can leave you feeling alienated and lonely. The most important advice I can offer for grieving infertile couples is to reach out for help - you are not alone.

Jan DeMasters, PhD, RN is the CEO and founder of Total Health Concepts, a St. Louis based health consulting practice. Infertility, stress management and a mind/body approach to health and healing are focus areas of her practice. Visit the website at www.totalhealthconcepts.com