Stigma that should be erased

Be it a mis­car­riage, a still­born baby or a child who dies after birth, the grief re­mains

Mail & Guardian - - Comment & Analysis - Sitawa Wa­fula

In Novem­ber 2014, Wan­jiru Ki­husa went into labour when she was only 20 weeks preg­nant and de­liv­ered a still­born baby girl. She de­scribes it as a har­row­ing ex­pe­ri­ence. The fol­low­ing year, she be­came preg­nant again and had a mis­car­riage at eight weeks. After ex­pe­ri­enc­ing this sec­ond loss, she says life lost its colour and she felt no one un­der­stood the amount of pain she was in.

Wan­jiru’s feel­ings are com­mon to those who go through preg­nancy and in­fant loss. De­spite the fact that up to 20% of known preg­nan­cies end in mis­car­riage, the lack of con­ver­sa­tion about this of­ten leads in­di­vid­u­als to be­lieve they are to blame. Feel­ings of fail­ure, shame, anger, guilt, long­ing, de­pen­dency and in­se­cu­rity, among oth­ers, are typ­i­cal emo­tions. De­pres­sion is very com­mon among those who have a mis­car­riage or de­liver a still­born child and is some­thing that af­fects mil­lions of women world­wide.

These women also have to deal with so­ci­etal ig­no­rance about child­loss grief. Ac­cord­ing to Wan­jiru, the death of a child, just like that of an adult, does not go away quickly, yet peo­ple around you move on fast while you are left drown­ing.

“When a baby is born, we visit the par­ents and cel­e­brate with them. But when a baby dies, we pre­tend like noth­ing hap­pened. We want the be­reaved par­ents to move on as quickly as pos­si­ble. We even sug­gest that they should quickly get preg­nant again,” she said.

Wan­jiru even en­coun­tered peo­ple who won­der why par­ents grieve after a mis­car­riage. They make in­sen­si­tive com­ments like, “The baby wasn’t even fully formed”, thinking they are con­sol­ing the par­ents but for­get­ting that a hu­man be­ing can never be re­placed.

The griev­ing par­ents may also have to deal with myths. In Kenya, Wan­jiru found that child loss is sur­rounded by stigma be­cause some peo­ple be­lieve there is some­thing wrong with a woman who has had re­cur­rent losses. In­deed, re­cur­rent child loss is seen as a curse or pu­n­ish­ment from God.

In most tra­di­tional African cul­tures, these feel­ings are ex­ac­er­bated be­cause the worth of a woman is of­ten de­ter­mined by the chil­dren she car­ries to term. Those who fail to give birth may face di­vorce and “re­place­ment” by a sec­ond wife who can bear chil­dren. Most women who ex­pe­ri­ence early preg­nancy loss also have to deal with so­ci­etal be­liefs and myths that the loss was a re­sult of promis­cu­ity by the woman or “curses to her seed”.

After her sec­ond loss, Wan­jiru be­gan blog­ging about child loss and, in the process, launched the or­gan­i­sa­tion Still A Mum in Oc­to­ber 2015. Her or­gan­i­sa­tion pro­vides coun­selling as well as phys­i­cal and vir­tual sup­port group meet­ings for par­ents who have ex­pe­ri­enced loss. They also en­gage med­i­cal ex­perts to en­sure no re­cur­rent losses hap­pen.

For far too long there has been al­most no sup­port sys­tems to as­sist women and fam­i­lies who go through these types of losses. In most workspaces, for in­stance, fam­i­lies rarely re­ceive leave days to grieve. But, thanks to peo­ple like Wan­jiru, these losses are start­ing to be more widely ac­knowl­edged.

Glob­ally, Oc­to­ber 15 is a day set aside to re­mem­ber the lives of ba­bies lost dur­ing preg­nancy, dur­ing birth or soon after. It’s also a day to raise aware­ness and spark con­ver­sa­tions about is­sues those who have lost a baby go through and how to help them in their heal­ing jour­ney.

For the sec­ond year run­ning, the Still A Mum ini­tia­tive will be mark­ing this day by plant­ing trees with par­ents in mem­ory of ba­bies gone too soon.

At a global level, ma­ter­nal health pro­grammes and tar­gets un­der the sus­tain­able de­vel­op­ment goals should be broad­ened be­yond in­creas­ing safe de­liv­ery and care of new­born ba­bies to in­clude women and their part­ners who have not been able to have a live, healthy baby. Ma­ter­nal health should be as much about tak­ing care of the mother and her part­ner dur­ing loss as it is en­sur­ing a mother and baby are safe and alive.

At an in­di­vid­ual and lo­cal level, friends and fam­ily need to show up for those who have lost their ba­bies and le­git­imise their grief.

More public ed­u­ca­tion needs to be done to des­tig­ma­tise the losses, to take away the shame and blame and to ex­plain the un­con­trol­lable bi­o­log­i­cal rea­sons for such losses.

Hos­pi­tals should also en­sure that there is a coun­sel­lor who speaks to par­ents be­fore they are dis­charged.

Other types of coun­selling for the par­ents should be avail­able to help them through their grief and as­sist them in look­ing for hap­pi­ness.

Ini­tia­tives such as Still A Mum are a good ex­am­ple of how or­gan­i­sa­tions can help. No one who is griev­ing should feel iso­lated, alone or to blame. They should feel sup­ported.

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