Ms I. waiting patiently without her mom.
SEPTEMBER 3, 2020
I just want to see my child
“I just want to see my child.” Mr K’s mother pleads on WhatsApp. I promise to do what I can, knowing that it will be nearly impossible to get her into to the intensive care unit where her son has been for nearly 2 months.
“We’re so sorry but Ms I’s surgery has been postponed again.” I say anxiously on the phone.
“Why?” pleads her mother. “You promised today was the day. It has been cancelled four times.”
The answer yet again does not bring solace to Ms I or Mr K’s mothers. It is all just too difficult. Everything sounds like an excuse and that that their children are not a priority.
During the 4 weeks that Ms I had been in hospital with a suspected brain tumour, awaiting a biopsy to determine if treatment is an option, her mom had to leave the 3-year-old and go home. Initially it was because she was in the advanced stages of pregnancy (hospital policy) and within a few weeks because she had a still birth and was recovering from the caesarean section. She was desperate to be with Ms I after her loss. When she was finally allowed to come to the hospital, she tested positive for COVID within a few days, acquired from another parent and was again sent home. Requests to send Ms I home until the surgery was guaranteed could not be honoured. If she left the ward, there might not be bed space for her when her biopsy date arrived.
What led to this delay? Unfortunately, this is often the plight of children with neurological issues that require surgery. Firstly, resources are limited and there is only one centre that can deal with these particular issues in KZN. Then when they have surgery there needs to be an available ICU bed to ensure adequate post-operative care. If there has been an emergency admission that same day, the bed cannot be promised. The COVID-19 pandemic has further strained this already exhausted service. Reduced staff numbers due to COVID infection, quarantine and/or isolation leads to a reduction in the numbers of children that can be admitted. In addition, staff numbers have further been reduced to allow for COVID and ‘Pyrexia Under Investigation (PUI)” wards over and above the normal wards. All in all, a terrible time for everyone.
As the palliative care team, our role has expanded to include trying to contain parents’ and caregiver’s anxiety and frustration that comes from not being able to be with their hospitalised child. We are also trying to support the ‘abandoned’ child. The doctors and nurses around us are battling their own moral injury from violating the rights of the child, not knowing the full extent of the damage that we are doing.
As an organisation providing palliative care, we are stepping up to ensure that these children don’t fall through the cracks and that whatever their outcome is they have quality of life free from pain and other symptoms.
Right now, the only thing we can be sure of is that the impact of COVID is going to be even more far-reaching than anyone of us can ever imagine.
Our love and support go out to all those struggling parents and health care professionals having to find new ways of coping in 2020.
If you want to support the work of Umduduzi or find out more click here.