Mothers speak out on infant loss: ‘To this day, I don’t know why my baby died’

Mothers speak out on infant loss: ‘To this day, I don’t know why my baby died’Mothers talk to Ourhealth about losing their newborns:(File photo)

It’s every pregnant woman’s dream to go home with a healthy baby, but what happens to her psychological wellbeing when her baby dies — either at birth or days after? Hospital-run support groups may help the grieving process, reports OurHealth journalist Marcia Zali.

Read More

Lebo Sithole lost three babies who were all born prematurely. Two of these babies were born at Tembisa Hospital — one in November 2017, and the other in July 2019.

“I went into labour in November and around 1 am and my family rushed me to the hospital because the ambulance was taking too long to arrive. At the hospital, I was taken to the labour ward where I was given a mattress — to sleep on the floor — since the beds were all occupied.”

In her account of the labour and birth, she says she spent hours unattended to and had to eventually give birth on her own.

“My baby was alive when I gave birth, but passed away two hours later. I suspect this was because I had no one to assist me during the birth, and that my baby was not put into an incubator in time [to save her].”

The World Health Organisation (WHO) defines perinatal deaths as either a stillbirth of an infant with a birth weight of 1000 grams or after 28 weeks gestation, or an early neonatal death in the first seven days after birth.

History repeats itself

Sithole’s second loss at the same hospital occurred in July last year, when she went into premature labour again.

“I was already bleeding when I arrived at the hospital, and was rushed to the labour ward where I gave birth to a baby girl. She was alive but seemed to be struggling to breathe. I insisted that she be put into an incubator to avoid what happened in 2017. They took about an hour to finally put her in it,” says Sithole.

She thought that history would not repeat itself but things took a turn for the worst as she was wheeled from the labour ward.

“As the nurse was wheeling me out, her colleague came towards us and handed her forms for me to sign. I knew then that my baby had died because I had been given the same forms two years ago. This broke me because I thought that this time I would go home with my baby,” she says.

‘I was inconsolable and in disbelief’ 

Another mother who experienced the pain of losing more than one baby at Tembisa Hospital is Thabelo Mungovhoro. Last year, her twins both died days after their premature birth.

“I used to attend antenatal care check-ups at the hospital, because I once had an operation where fibroids were removed.  During the third trimester, my legs were swollen and I eventually went into premature labour. I then gave birth to twins,” narrates Mungovhoro.

The twins were born on 15 October, and to Mungovhoro, they seemed healthy. However, the twins were put in separate wards — one infant was placed in the Intensive Care Unit (ICU), and the other in Ward 4.

“I wasn’t told why one baby was in ICU while the other was in Ward 4. I was later told by a nurse that the infant who was in the ICU had a lung infection that was difficult to treat. The other twin didn’t have any complications,” she adds.

Tragedy struck on 17 October — just two days after the twins’ birth.

“Sometime in the morning, I went into Ward 4 to feed my baby and I couldn’t believe what I saw. My baby was lying dead in bed. I was shocked because no one bothered to inform me, even though I was admitted into one of the wards. They were supposed to at least come to fetch me from the ward. I tried to get answers from the doctor but he said he was busy. To this day, I don’t know why my baby died”, she says.

Mungovhoro says she didn’t stop trying to find answers, even when faced with unhelpful advice from a doctor in the neighbouring ward.

“I was inconsolable and in disbelief. They called a doctor from another ward to come and talk to me, but that doctor told me that I should’ve started my antenatal care earlier so they could monitor my blood pressure properly. But I had been doing that [attending antenatal care] all along. They still could not explain the cause of death. This made me question whether they’ll be able to record the death properly.”

Mungovhoro’s baby in ICU was still in a critical condition, but she felt grateful that the nurse’s explained the condition to her. However, another nurse blamed her child’s lung infection on the influx of non-South Africans in the hospital, which apparently made the infection more difficult to treat — an example of xenophobia in the medical field.

The family was eventually called in six days after the death of the first infant, to inform them that the hospital could no longer keep the other one on life support. Mungovhoro and her family had to deal with another loss. “It was difficult for me to accept this but I could see that she was fighting and didn’t want her to suffer more than she had been since she was born,” she says.

Grieving stifled without answers

Both Sithole and Mungovhoro are struggling to cope with their deep losses. They say that not knowing the cause of their infants’ deaths has made it hard for them to grieve. They also plan to take legal action against the hospital, as they feel that nurses and doctors were not following proper duty of care protocols, and were negligent.

Clinical psychologist, Mandy Rodrigues, works with women who have had a stillbirth or a perinatal death, as well as in infertility counselling. She says that research shows that the doctors who don’t get sued by grieving families are those who “come back and give the patient empathy, feedback, closure and refer the patient to psychological help.”

“The hospital must have a protocol […] and that includes having a nurse who will take a picture of the baby, or having a bereavement facilitator be with those moms and just help them through the process,” says Rodrigues.

According to Rodrigues, a bereavement team consists of professionals who are trained to assist patients to deal with a loss. In the instance where a woman has lost a baby, the team will come in to take a picture of the baby, cut a piece of their hair, take their footprints and other mementos that the woman can look at when she is ready to do so.

According to Rodrigues, having support groups to help mothers who have lost their babies will assist them in dealing with the loss.

“When I see patients for closure, it probably takes two sessions in the hospital. If we could get a bereavement team to do this, and at least in the public sector we have got qualified staff who are trained to do so, and can have support groups of people who have gone through loss and miscarriage. To have something like that, which can be run by the hospital or offered by the hospital, could be helpful,” she says.

The grieving process differs from patient to patient and Rodrigues says that without support, it could take longer for some women. “A grief reaction for about a year is normal,” explains Rodrigues, “but a complicated grief reaction can be ten, fifteen or twenty years. If you can catch that patient in time — in two or three sessions — you can then give them the coping skills they need.”

‘The hospital did not kill their babies’

According to Tembisa Hospital spokesperson, Nothando Mdluli, psychological support is offered at the hospital and that mothers who experienced stillbirths are counselled and possible causes of stillbirth are elaborated on by doctors and nurses. Further counselling is then on the mother to decide.

Mdluli says that in the case of early death, mothers are prepared by healthcare workers for any eventuality. According to her, while the baby is alive, counselling is given to the mother in the ward, and the mother is informed of the treatment the infant is given, as well as what signs to look out for if the baby’s condition changes. If the baby passes away, the mother is told what caused their child’s death, as well as how the hospital handled the infant’s changing condition.

According to Mdluli, Sithole and Mungovhoro are said to have received counselling and were referred to further psychological support. 

“It is highly unlikely that Mungovhoro didn’t receive counselling — the baby was admitted to Ward Four, where our nurses and doctors uphold the duty of explaining the condition of their babies to mothers. However, if she can come to the hospital and go to Ward Four, the ward will arrange for her to get counselling,” says Mdluli.

Mdluli says that Sithole needs two types of counselling, “if she claims that she did not receive any.”

“Firstly: Psychological counselling rendered by our clinical psychologists in order to assist with her emotional healing. Secondly: Medical counselling where we conduct a deep investigation of the patient in order to find out what is wrong. This would need thorough investigation and would also assist the patient with critical information regarding her medical condition,” says Mdluli.

Viability needs to be taken into account

The commonality between Sithole and Mungovhoro’s infant loss stories is that of premature birth. Mdluli says that “it’s important to note the viability of the baby or pregnancy. Viability is the potential or ability of the baby to survive after birth. And according to our Maternal Care Guidelines, the babies who have the potential to survive have a weight of 800 grams, or a mother who is more than 28 weeks pregnant.”

When responding to the allegations of negligence from the hospital, Mdluli says “the hospital did not kill their babies and we were not negligent. We went through the files of the babies and all necessary medical care was given to them.”

In the case of Sithole she says, the premature baby was not viable and that “prospects of the baby surviving were very low.” According to the hospital, conservative management, such as oxygen, was given to the baby.

In Mungovhoro’s case, Mdluli says that the infant who was in ICU was attended to correctly for severe respiratory problems. So what of Mungovhoro’s claim that she found her other child had passed away without staff alerting her? 

Tembisa Hospital says “it’s unfortunate that the mother was the first to notice that the baby had died, but that it doesn’t signify negligence. On the day that the baby passed away, they were seen by the doctors during the rounds, and the baby was periodically monitored by the nurses.”

“Care was given to the baby,” Mdluli re-iterates. 

The journey continues

The still-grieving mothers have been encouraged to write to the hospital, so that they can be directed to the proper channels to address their concerns, and get medical explanations for why their children passed away.

Sithole wants to never set foot in Tembisa Hospital again, and declined the offer for psychological and medical counselling offered, whereas Mungovhoro says that she will seek help from the hospital — to get answers and find the closure she needs. -Health-News