When the Worst Happens:
Helping a Mother Who Has Lost a Baby
Roanoke, Virginia, USA
From: LEAVEN, Vol. 36 No. 1, February-March 2000, pp. 6-7.
We provide articles from our publications from previous years for reference for our Leaders and members. Readers are cautioned to remember that research and medical information change over time
Why does a La Leche League Leader need to think about miscarriage, stillbirth and infant loss? Aren't our Groups full of healthy, happy mothers and babies? If these were your thoughts upon seeing the title of this article, you're not alone.
Unless you have been touched personally by loss, you might assume pregnancy loss and newborn death are uncommon. On the contrary, statistics for the United States show that 15 to 20 percent of confirmed pregnancies end in miscarriage; 1 in 100 babies is still born; 1 in 1000 babies dies of SIDS; 1 in 250 babies dies due to prematurity, genetic abnormalities, illness or accident before his or her first birthday (United States National Center for Health Statistics, 1996). These are sobering statistics, yet they do not begin to speak of the devastation experienced by the families of these babies.
What do all of these numbers have to do with you? It may be that you find a mother in your Group has a breastfed infant who dies of SIDS, your Group Librarian's toddler succumbs to pneumonia, or a Leader Applicant suffers a stillbirth with her third child. Any of these incidents could immerse you in the emotions and questions of someone looking to you for information and support.
As a Leader, I first dealt with loss when my own son died at 23 weeks gestation due to a neural tube defect. That was six years ago and it taught me about grieving, compassion and the need for support. In my LLL work since then, I have encountered several incidences of miscarriage, two deaths of a twin in which the other twin survived, one stillbirth and three deaths due to anomalies. I think these occurrences were always there, but suddenly I became aware of them and of how I could better serve these mothers. I realized that as La Leche League Leaders we have great experience as listeners which can be used to help these grieving mothers.
There are several ways in which your expertise can be useful:
Give the mother information about milk production and engorgement.
Mothers whose babies die after the first trimester are likely to produce milk, which may be an additional emotional blow. Make sure you have kept up-to-date on milk production information. You can offer the mother information about why she is making milk and how breastfeeding is a supply-and-demand system. Ice packs, bags of frozen vegetables, and chilled or room temperature green cabbage leaves are helpful for reducing engorgement. Cabbage leaves are often the most comfortable and effective treatment. It has been reported that cabbage inhibits milk production as well as relieves engorgement.
If a nursing mother is very uncomfortable, suggest that she sit in a warm bath and lean over into the water, allowing the milk to leak out. She could also stroke her breasts from the chest wall out toward the nipple to encourage milk to flow. If she prefers, a warm shower may also serve this purpose. Expressing or pumping a little milk - just enough to relieve the fullness, even if it is only a few drops - can also help her feel more comfortable. These measures will not increase her milk supply and may help to prevent health complications like mastitis. Refer to the BREASTFEEDING ANSWER BOOK for more information on engorgement relief.
Offer the mother information about the benefits of breastfeeding.
A mother who has miscarried or whose child has died may feel guilty about a thought, action or inaction she thinks may have contributed to her baby's death. She will have a voracious need for information pertaining to her situation. For instance, the mother whose child dies of pneumonia or meningitis may call wanting to know how she failed in caring for her child. After all, breastfeeding protects babies from illness, right? Share your knowledge about the advantages of breastfeeding with additional emphasis on the fact that nothing is 100 percent effective at warding off illness. You might also concentrate on the emotional benefits of the breastfeeding relationship and how it allows mother and baby to share a unique and intimate bond. Knowing she has provided the best for her child and has been as physically and emotionally close as possible will be a comfort to her as she deals with her grief.
Suppose the mother is nursing a toddler when she miscarries. In addition to the potential for her own feelings of guilt, she may even be told (or secretly feel) that nursing contributed to her loss. This information can be heart wrenching since she not only has lost the baby, but also may feel compelled to give up breastfeeding the older child. You can help by guiding her to accurate information on the role of breastfeeding in miscarriage and preterm labor. (THE WOMANLY ART OF BREASTFEEDING, 1997 edition, p. 253; BREASTFEEDING ANSWER BOOK, 1997 edition, p. 155, 345-46.) Share the information, including all pertinent references, without giving advice or making sweeping statements about her particular situation.
Consider the mother who, for whatever reason, did not breastfeed her dying child. Maybe she breastfed her first child, but this one was premature and she was not allowed access, or possibly the loss was several years ago and now, when she is nursing her next baby, she feels guilty about shortchanging the one who had died. As in other situations in which a mother laments her lack of breastfeeding, support her with comments about how hard it is to overcome the hospital environment or doctor's objections to her breastfeeding. Depending on her need, offer her correct information and resources. Reassure her that she did the best she could at the time, with the information and support she was given, and allow her to grieve this additional loss.
Give the mother information about nursing in the hospital for the short time she and her baby may have together.
What about a really stressful call from a mother who is nursing or trying to nurse a gravely ill baby? If the baby is being given comfort measures only, then the mother will have much easier access to her baby for holding and breastfeeding. In this case, technique is less important than encouraging the mother to let the baby nuzzle and latch on as he or she is able. Hopefully, medical caregivers will have prepared the mother for the possibility of baby's death at the breast or in arms. Don't be put off if the mother mentions this possibility to you. Most parents derive comfort from knowing they have provided comfort, warmth and love to their babies for as long as they could.
When it comes to the seriously ill baby who is undergoing potentially life-saving treatment, breastfeeding may be much more challenging. You can assist these nursing mothers with information about the advantages of breastfeeding, and with alternative ways to bond with their babies such as stroking skin, holding a hand, talking, or singing. If you are familiar with resources to which parents can turn for specific information, share them. The baby's health care providers may also know of helpful resources.
THE BREASTFEEDING ANSWER BOOK includes information on milk storage guidelines (p. 252), helping a mother with an ill baby (p. 254, 264-66, 287-90), and the special needs baby (p. 295-316). Call your Professional Liaison Leader and relay the particular circumstances of the situation. She may have additional resources. Documented information can then be shared with the parents which they may choose to discuss with the baby's doctor. If you know of an LLL Leader with experience in the particular medical situation, ask her for any information she has found helpful and then review it to be sure that it is consistent with LLLI information. Refrain from passing on word-of-mouth generalizations. These parents need authoritative resources if they are going to present them to their baby's doctor. In addition to factual information, you may offer praise on how well they are advocating for their baby and how important they are to their baby. They may not even feel like their own baby's parents since they do not really have control over his care. You can help them feel more empowered as parents.
Use listening skills when a mother needs to talk about her grief or loss.
Just as important as any technical information you can supply are the listening skills cultivated through La Leche League leadership. Grieving parents need to express their feelings. They may not acknowledge this need until they begin talking and it all comes pouring out. Don't be surprised when a call about drying up a milk supply turns into a deluge of emotion. Just listen. If you comment, think carefully before you speak. HRE skills are advantageous here. Reflect her feelings: "It is really difficult for you to have your body making milk when there is no baby to nurse." It is a relief to bereaved parents to know their emotions are accepted and understood.
Use the listening skills you learned through Human Relations Enrichment sessions and really hear the mother. If she is going to pump, give her accolades and share information on types of pumps and scheduling, as well as appropriate storage of milk. You will find this information in several sources: the BREASTFEEDING ANSWER BOOK; tear-off sheet #555-27 Storing Human Milk, and pamphlet #388-19 The Hospitalized Nursing Baby. Do not be surprised if the mother turns to hospital personnel for advice.
She is in a life and death struggle for her child, and she needs to trust the people caring for her child. She may still need your emotional support and willingness to listen even if she chooses not to use the information you have provided.
As I found following my son's death and in working with other grieving mothers, people need to be heard and want to feel normal. Grieving mothers are not so different from the other mothers who call you for information and support; listen to them, offer information and support, and be the La Leche League Leader you are trained to be!
How The Group Can Help
By Deborah Wirtel and Christine Koeppe
Our Group recently lost an important member. A Group mom's only child died from meningitis. It was sudden and left us wondering how we could support the mother. The NEW BEGINNINGS Column, "Toddler Tips: Comforting a Grieving Friend," in the May-June 1999 issue aided us immensely. The following are a few tips that helped us all.
This was one of the hardest situations our Group has had to experience. We hope that what we learned can help other Groups facing similar circumstances.
Allen, M. Miscarriage: Women Sharing from the Heart. New York, NY: John Wiley and Sons, 1993.
Horchler, J. The SIDS Survival Guide: Information and Comfort for Grieving Family and Friends and Professionals Who Seek to Help Them. Hyattsville, MD: SIDS Education Services, 1994.
Ilse, S. Empty Arms. Longlake, MN: Wintergreen Press, 1982.
Kohner, N. When a Baby Dies: The Experiences of Late Miscarriage, Stillbirth and Neonatal Death. Hammersmith, London: Pandora Press, 1995.
Limbo, R. When a Baby Dies: A Handbook for Healing and Helping. Lacrosse, WI: Resolve Through Sharing, 1986.
Additional information is available from the following organizations:
Share; St. Joseph Health Center, 300 First Capital Dr, St. Charles, MO 63301 (636) 947-6164 Phone (636) 947-7486 Fax
Information, education and resources on the needs and rights of bereaved families.
Perinatal Loss Project; 2116 N.E. 18th Ave. Portland, OR 97212-2621 (503) 284-7426
The Department of Health in your state or country may offer additional resources.