A devastating diagnosis
Michael and Zanele are very happy to learn that they are expecting their third child and, as they have 2 girls, they hope to welcome a baby boy into their family. During a routine scan at the 20-week check-up the sonographer suddenly goes quiet and has a masked expression on her face. Michael asks her if there is something wrong.  She says she needs to call a registrar to review the scan because she has seen something abnormal. She hurriedly exits the room, leaving Michael and Zanele confused and scared. On examination of the scan, the registrar suspects a heart defect and tells them they will need to be referred to a maternal-fetal medicine (MFM) specialist for further testing and a confirmed diagnosis. However, this can only be done at a tertiary academic hospital 200km away from their rural hometown.

A lonely journey
As Michael is unable to get time off from his work, Zanele makes the long trip alone using public transport for her appointment the following week. The MFM team confirm a diagnosis of a severe congenital heart defect and tell her they will book her in for a termination the following day. Zanele is devastated and says she would like to discuss the options with her husband as their religious and traditional beliefs do not regard termination as an option.

The decision
Zanele contacts Michael and together they make the decision to decline the termination. When Zanele tells the MFM specialist of their decision he tells her that she is making a mistake and reluctantly refers her to a neonatologist and a paediatric cardiologist. After consulting with them, they deem the defect inoperable and tell Zanele that the baby’s condition is fatal and not compatible with life. They inform her that although she may carry to term there is a strong likelihood her baby may be still born or die soon after delivery. They refer her back to the local hospital for ongoing ante-natal care.

The birth  
At 36 weeks Zanele goes into labour and is admitted to the local hospital for the delivery. Due to the baby’s diagnosis of a life-limiting condition Zanele is put in a side ward and left there on her own with a midwife checking in on her periodically. No family are allowed to be with her due to the hospital visiting hour protocols. Zanele informs the nurses that she knows her baby may not live long and that she would prefer no lifesaving interventions be performed. She tells them that she wants to hold him after he is born. Unfortunately, this is not documented in her file and there is no written plan in place with these details for the delivery. At handover that evening the night staff are not informed of Zanele’s request. Due to prolonged labour and fetal distress, Zanele is eventually given an epidural caesarian section. Baby Henry is born at 01h00 and immediately taken to the nursery, where lifesaving procedures are performed.

The loss and the aftermath
Zanele is taken back to a general ward and a few hours later she is told the sad news by a busy nurse that, although they tried their best to keep baby Henry alive so she could get to meet him, he died soon after being admitted to the nursery. Zanele asks to see him and learns that his body has already been taken to the mortuary. She becomes hysterical and is quickly sedated to calm her down. When Michael arrives, he is also told the sad news and asked to sign the death notification and to make plans with a funeral home to collect the baby’s body.

Zanele is discharged the next day and given a date to return for her six-week post-natal checkup. No other referrals are given for ongoing care and support.

Michael and Zanele journeyed through this experience alone with no collaborative support and care.