Your stillborn baby:

Finding Answers

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Your stillborn baby:

Finding Answers A stillborn baby is one of the most devastating losses a couple can experience. No one ever expects a baby to die. Yet in Wisconsin, a family suffers this type of loss almost every day. In the initial shock, many parents do not know what to ask, but eventually most will begin to wonder, “Why did this happen? Is it my fault? Will it happen again? And what can I do to prevent a recurrence?” The Wisconsin Stillbirth Service Program (WiSSP) is dedicated to helping answer questions like those. We are a community-based program that studies the causes of stillbirth. Since our beginning in 1984, WiSSP has helped to assess more than 2,600 infants and provided diagnostic information for counseling of their families. We understand that no one can take away the pain and that it is normal to feel overwhelmed, angry and terribly sad. You will know when you feel ready to do things. We offer suggestions that may help you through the difficult times ahead: • See, hold and name your baby. Although it may seem difficult, we strongly encourage this. • Gather mementos such as photos or footprints to help you work through the grieving process. You may not be ready to look at them now, and you can always put them away. If they are never obtained, there is no way to go back and create them. • Write down your questions so you can ask them later. WiSSP collects information from birthing hospitals throughout the state and sends it to a central location where it is reviewed by the WiSSP Director, Elizabeth McPherson, M.D. She is a board-certified medical geneticist at Marshfield Clinic with more than 30 years of experience and has evaluated hundreds of stillbirths. The main goal of a WiSSP evaluation is to answer questions such as why the stillbirth happened, what are the chances of recurrence and whether anything can 1

be done to reduce those chances. We can determine a cause for about two-thirds of all stillbirths. In most cases this is reassuring because stillbirths usually are not caused by something you did or did not do. Furthermore, whether or not a cause is found, most couples who experience a stillbirth have a good chance of having healthy children in the future. A second goal of a WiSSP evaluation is to learn more about the causes of stillbirths in general, so that we may prevent them for others.

What is a WiSSP evaluation? Your health care providers already have or will soon be getting most of the information that will help determine why your baby died. This includes records from your pregnancy and delivery, family history and some routine lab work. Whenever a baby is stillborn, the placenta should be evaluated in a pathology lab, and a small sample of placenta should be sent for genetic studies. Photographs and X-rays obtained at the birthing hospital can also provide Dr. McPherson the opportunity to “see” your baby without the need to send your baby’s body anywhere. One of the more difficult decisions for many families is whether to have an autopsy. This can be performed for infants of any size and can give useful information, even if the baby has died some time before delivery. We recommend that you consider an autopsy, even if your baby appears perfect on the outside, because it may reveal a clinical cause of death such as congenital heart disease, internal bleeding or infection that would not otherwise be detected. In most cases, this can be done at no cost to you right at the hospital where you delivered or at a neighboring hospital. Your baby’s body will always be treated with respect and will be returned within a few days for burial or cremation according to your wishes. Prior to autopsy, please take the time you need to see and hold your baby. Delays of hours or even a day or two have only minimal effects on the chance of finding an answer. While each part of the evaluation may be the one that provides the answer for a given family, we understand that some families will not feel comfortable with all parts of the evaluation. Diagnoses are often possible even if information is limited. WiSSP will evaluate whatever information you choose to provide. Whatever your decisions are, we respect them. 2

Making sense of what happened As part of the natural course of life events, we don’t expect babies to die. Such a loss can be overwhelming and devastating, as great of a loss to you as an older child or any loved one. When stillbirth occurs, it’s harsh news for parents who were anxiously awaiting a baby. It is natural for you to grieve deeply for your baby and for the hopes, dreams and wishes you had before the anticipated birth of your baby. You may feel a strong sense of sadness, anger and perhaps bitterness at the unfairness of this tragedy. You may experience feelings of loneliness and longing, helplessness or confusion. Many parents also feel guilt. They often wonder if they did something to cause their baby’s death; this is rarely true. These intense emotions are real and a normal part of grieving, the process of making meaning out of your loss and of life without a loved one. Grieving is not easy. It is long, unpredictable, and requires a lot of energy. You need time to grieve because it is necessary to work through the pain toward healing.

Coping with your loss Dealing with the death of your baby may be one of the most painful experiences in your life. Everyone copes and mourns differently. Perhaps a few of the following suggestions can help you endure some of the difficult times. • Take care of yourself. Eat well. Get plenty of rest. Stay well physically so that you can continue to heal emotionally. • Express yourself. Talk about your baby, your feelings, your fears and your grief. Keep a diary, write a journal or start a flower garden. This may help you to see more clearly. • Read resources. Many books, articles, poems and videos can provide information, guidance and support. • Find a support network. Such a network may be your family, your friends or your faith community. You may want to contact a support group for parents who have experienced the death of a baby, to share your story and feelings and to learn from others who also have “been there.” Above all, give yourself time. Be patient. You will never forget your baby, but you will heal. Healing is an ongoing process. It does not happen overnight but it will happen. 3

Given your loss (and for mothers, also the hormonal changes your body experiences after pregnancy), you are at a much higher risk to experience symptoms of depression. Depression is a mood disorder that affects the way you think and feel. The most common symptom is a feeling of deep sadness, which is normal to experience after a loss. However, you may also feel as if you just can’t cope with life. Other symptoms include: • Gaining or losing significant weight • Sleeping too much or too little • Feeling tired all the time • Feeling restless • Feeling worthless or guilty • Having trouble thinking clearly or making decisions • Thinking about death or suicide It is important to talk to your provider about any symptoms you are having. There are many ways to treat depression. Talking to your provider is the first step toward feeling better.

Where else can I turn for information? In conjunction with the Infant Death Center and Children’s Health Alliance of Wisconsin (www.chawisconsin.org/idc.htm), we are revising a list of materials for bereaved families and updating our lending library.

How to contact WiSSP WiSSP Director: Elizabeth McPherson, M.D. Medical Genetics, Marshfield Clinic 1000 North Oak Avenue Marshfield WI 54449 Phone 1-715-221-7400 Toll free 1-877-216-8535 Dr. McPherson’s direct line 1-715-221-7409 Dr. McPherson’s pager 1-715-389-6876 Fax 1-715-389-4399 Email: [email protected] 4

Cost The evaluation of the data sent to WiSSP is done free of charge. Your local hospital will follow normal practices regarding billing for laboratory testing and pathology. Placental studies, including genetic tests, often are covered by the mother’s insurance but you need to check with your providers. WiSSP is funded partially by a Maternal & Child Health grant, supported by Marshfield Clinic. We do not expect any donations but some families have asked us if they can help support the program by directing memorial funds to WiSSP. We certainly would graciously accept any donations and use them to enhance the program. To make a gift to WiSSP, please make checks payable to “Marshfield Clinic,” place “WiSSP” in the memo line and mail to: Marshfield Clinic Development Department 1000 N. Oak Avenue, 1R1 Marshfield, WI 54449

More details See our website for more details and links to resources and more details of the program: www2.marshfieldclinic.org/wissp/

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and State of Wisconsin Birth Defects Registry 2957-000