“There is nothing scary like watching your own baby deteriorate in your hands while you know that you cannot do anything about it,” Miss Nontobeko Ndlovu said while staring at her sickly two-year-old baby.
The baby takes a deep sigh, fidgets, coughs continuously and lets out a scream.
She struggles to take up oxygen and finds it difficult to breath.
Every movement she makes causes her mother’s heart to sink as it comes as a reminder that the tragedy, she fears the most is slowly approaching-the death of her only baby.
Ndlovu from Sabahwisa village in Nkayi in Matabeleland North province looks into her baby’s eyes and emotionally narrates her ordeal as if the baby understands what’s taking place.
“It pains me to see you deteriorating but my hands are tied. I don’t have the thousands needed to take you for surgery in Italy. Even if a miracle happens and l get the money l don’t have a passport neither can l get an emergency passport. I was thinking l would take you for temporary treatment in Mutoko (Mashonaland East) but we have been told to stop coming because of the lockdown,” she said forcing her tears back.
Her daughter was diagnosed with a Congenital Heart Disease (CHD) known as Tetralogy of Fallot which is a rare condition caused by a combination of four heart defects.
This causes the poor flow of oxygen leading to difficulties in breathing and in some cases stunted growth.
A CHD is a heart problem which is present at birth and is caused by abnormal formation of the heart during foetal development.
In most cases, when a baby is born with CHD, there is no known reason for it although scientists suggest heart defects can be related to an abnormality in the number of an infant’s chromosomes, single gene defects, or environmental factors.
Mostly CHDs are discovered late and demand surgeries that cost an average of US$15 000 and are usually available overseas.
Discovered at a later stage, baby Buhle needs an emergency surgery which is already overdue with three months.
Where does her single and jobless mother from the heart of Sabahwisa village get the money to take her overseas for treatment?
How does she travel whilst borders are closed and where does this ordinary woman from the Southern region of Zimbabwe get money to book a flight to the Eastern world?
With a heart boiling with love and an empty pocket, Ndlovu has no option but helplessly watch her daughter’s health deteriorate.
Ndlovu mirrors the challenges faced by parents whose babies were diagnosed with CHDs in the southern part of the country.
An investigation by this publication revealed that at least 40 babies from Matabeleland North, South, Midlands and Bulawayo provinces succumbed to heart defects during the lockdown period so far.
Meanwhile, over 25 babies are in need of urgent heart operations to save their lives which surgeons said are at risk due to the intensity of the defects.
A report by Brave Little Hearts Zimbabwe (BLHZ), an advocacy organisation formed by a parent Tendai Moyo after losing her baby to a CHD showed that this number could be lesser than the actual one on the ground given that Ministry of Health and Child Care does not have a database where these deaths are recorded.
The statistics captured are from those parents who come through the organisation and report through a WhatsApp platform.
What about those in deep rural areas without network who are not even aware of BLHZ WhatsApp platform?
Patients from the Southern region cannot access surgeries because the region’s biggest referral hospital Mpilo Central ceased conducting heart surgeries years ago.
Before lockdown, patients from Southern Zimbabwe would travel to Mutoko in Mashonaland East for temporary treatment offered by visiting Italian doctors who could come and select a few to go with to Italy for surgeries.
She said even before lockdown it was still hard to access treatment in Mutoko because of financial challenges.
“Getting transport from Nkayi to Mutoko was another challenge especially travelling with a sick child. A lot of expenses were involved,” she said.
Besides transport, patients from the Southern region face accommodation challenges while in Mutoko.
“You will be knowing nobody there and with a child you can’t sleep anywhere. You need money to book a lodge or somewhere safe to sleep,” she said.
Another challenge is access to documentation in case a passport is needed because ever since lockdown intensified, government centralised the issuance of emergency passports in Harare alone.
“Even if a miracle happens and today l get a donation of the US$15 000 needed, l cannot easily access an emergency passport. l don’t have a permit for intercity travelling so it’s difficult. The issue of documentation is always a challenge for people from this region,” she said.
Another mother, Loyce Dhliwayo from Ingome village in Zvishavane in the Midlands Province said while the country is focusing on Covid-19, those with rare diseases are being neglected.
“CHDs are life threatening and government has to look into this. We are losing our children everyday but all the focus is on Covid-19. There should be a balance between the pandemic and such rare diseases,” she said.
Dhliwayo’s five-year- old child is suffering from a CHD called Aortic Valve Stenosis.
Her surgery was due last month.
A doctor at Zvishavane district hospital referred her to Parirenyatwa group of hospital after noticing the abnormality of the baby’s heart.
“They diagnosed her with a heart defect at Parirenyatwa and they referred me to India for a surgery. The surgeon said my baby’s heart now has a hole which puts her life at risk,” she said.
The average US$15 000 needed for a surgery excludes flight tickets and other expenses that one might incur like hotel bookings.
This is beyond the reach for ordinary citizens.
BLHZ founder Moyo told this publication that last month she launched a national appeal to the corporate world and individuals to assist in raising US$1.5 million to re-establish a cardiac surgery at Mpilo Central Hospital in Bulawayo.
“We have been going up and down seeking for help. We still hope that we will find help. This is a huge crisis for the southern part of the country where there is no hospital offering even primary care to these patients,” she said.
Moyo said she also approached the Bulawayo minister of state Judith Ncube as well as Industry deputy Minister Raj Modi for help.
“The minister of state has been of help as she once wrote a letter to the Ministry of Health and Child Care asking for funds to assist us resuscitate a cardiac surgery at Mpilo. However, we haven’t gotten any response yet. As for Raj Modi he hasn’t responded us,” she said.
Mpilo Central acting chief executive officer Professor Solwayo Ngwenya said plans are underway to get funding to refurbish the specialist ward.
Last week Acting secretary for Health and Child Care Ministry Dr Robert Mudyiradima wrote to Moyo notifying her that government is now partnering with heart patients to commemorate World Heart Week.
This was just an agreement in commemorating together after the organisation approached government to do so but there were no solid talks with affected parents in mapping a way forward.
Director of non-communicable diseases in the Health and Child Care ministry, Wenceslas Nyamayaro admitted that it is a challenge for patients in the southern region as they don’t have a cardiac surgery.
“It’s really sad and action needs to be done urgently. This puts our children’s lives at risk and also having to channel foreign currency for surgeries results in a loss of resources for something we could be doing at home,” he said
Asked about the progress pertaining a letter that was written to the Health minister, Nyamayaro said they have not deliberated on it yet.
“It is probably waiting to be presented in parliament then a way forward is mapped,” he said.
Besides financial constraints and all other challenges, parenting children with heart defects comes with a lot of stereotypes and superstitious beliefs.
“They call my child mama angikhuli (mom lm not growing) and l am being accused of bewitching our son. It is unbearable. I don’t know when society will accept that just like any illness, heart defects come naturally and no one wishes their children such misery,” said Mrs Novuyo Hlupho.
Another challenge is lack of access to medication and oxygen.
Usually CHD patients need oxygen support as they face difficulties in breathing.
Mostly the child also has a stunted growth hence needs growth aiding medication.
“All these are very expensive and we cannot afford them. Especially with the lockdown, oxygen cylinders have been very scarce,” said Hlupho.
Bulawayo Minister of State Ncube said while waiting for the minister’s (Constantino Chiwenga) response, the corporate world should assist these parents so that at least Mpilo Central hospital ward is resuscitated.
“I am aware of the situation and l have since written a letter to the ministry asking for their agent action. We are still waiting for them but in the meantime l call upon the corporate world to chip in. This is becoming a crisis,” she said.
According to a report by the World Health Organisation (WHO), one in every 1000 children is born with a CHD. The report says Zimbabwe is among the most affected countries with a record of 200 affected children a year.
Zimbabwe has a fragile health delivery system forcing citizens to seek medical care from outside the country.
A report by a Chinese organisation on Africans seeking medication overseas says the most sort treatment by Zimbabweans include cervical fusion in China and heart surgeries in India and Italy among other treatments.