Children suffering from congenital heart disease in desperate need

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By Nkosikhona Dibiti

Brave Little Hearts Zimbabwe (BLHZ) is an organisation that advocates for the development of at least one cardiovascular centre in Bulawayo and Matebeleland region so that surgeries can be performed locally. The organization was borne out of a need to save the lives of children born with congenital heart disease.

According to the National Health Service (UK), congenital heart disease is a general term for a range of birth defects that affect the normal way the heart works. The term “congenital” means the condition is present from birth.

Speaking to Community Podium, Ms Tendai. Moyo Founder and Executive Director of BLHZ  said it all started when concerned parents coalesced to seek a donation for children who were affected by the condition in the southern region of the country. She also revealed that Mpilo hospital was key in the facilitating and distribution of the donated medication.

“As parents from the southern region we sourced a donation last year from the USA. Dr Novic donated medication for 250 children for a duration of 3 months and Mpilo Hospital helped facilitate our medication to come into the country and we partnered with them to help distribute the medication.
The medication was accessed by people from Nkayi Tsholotsho, Lupane,  Gweru and Kwekwe.”

However, Moyo bemoaned the depletion of the medication and difficulty in accessing the much needed surgery. “We are still struggling to get lifesaving surgery. The medication we had donated to help the poor defaulting children at Mpilo Hospital is now finished”, she said.

BLHZ managed to find an Indian hospital that agreed to lower its price from $10000 USD to $5500 per child for surgery. Despite the huge discount, the organisation has not yet found partners to help pay the $5500 per child that is required for surgery.

“We are still looking for partners to meet those costs for the kids to get surgery. But so far nobody has come forward to assist.”

Moyo disclosed that she lost a child to the disease hence her resolve and determination to fight tooth and nail for other children who find themselves in a similar position to her deceased child.

“I lost my child to heart disease in 2018 at Mpilo Hospital. We encountered so many challenges from late detection, delay in accessing medical records, and no access to funds for surgery, wrong medications and also a nurse forgot to put my child back on the oxygen support” , lamented Moyo.

Pamela Makai a parent to a two-year old suffering from tetralogy of fallot (a congenital heart disorder) said it’s difficult to raise a child with such a condition.

“The child may suddenly experience difficulty in breathing. Without surgery there is no solution and the surgery is too expensive”, she said.

Makai added that the recent doctors’ strike worsened the situation as routine reviews could not be conducted. “The recent doctors’ strike worsened things. There are regular reviews that need to be done and  going without  knowledge of status of a child’s health condition is too risky. It is against this adverse background that we have come together as parents to help each other because we continue to lose our children unnecessarily,” she said.

Phillipa Dube, another parent shared her ordeal in dealing with a child suffering from the congenital heart disease. “I have experienced a lot in living with a child with congenital heart disease. Firstly, I had to endure staying in hospital for a period of a month. Having a child who does not increase weight for at least 8 months, I ended up acquiring the knowledge of a nurse aid as a parent. I understand that children grow up differently. I learned that a child can be underweight not because of underfeeding but because of the condition. The condition is so bad and disruptive such that you cannot plan your things as all things become centred on the sick child.”  

The lockdown imposed as a result of the Covid-19 pandemic further compounded the plight of affected parents and children.

“Accessing medication was not easy for me, especially in early 2020 when lockdown commenced. I didn’t have enough money to buy medicine. My salary was not enough to buy medicine which was going for US$20 after every 10 days. My salary was almost equivalent to US $20 per month. To make matters worse, there were only a few pharmacies in Bulawayo which were selling Captopril and Frusemide syrups. Most pharmacies had no preservatives for the medicine. In May 2020 Brave Little Hearts Zimbabwe helped me to buy the  medicine”, said Dube.

Anna Phiri a mother of a child living with congenital heart disease also bared her soul with regards the tough times she is going through.” I find it difficult especially in my community, to explain to people why my son (Kudakwashe) has this condition. He was born underweight and I came to know about his condition when he was eight months. He was always sick and at the same time not gaining weight. I visited doctors but due to financial constraints we failed to proceed with all required procedures. We couldn’t  afford to purchase the special diet for him. The doctor said that the only option for the child is the surgery. The surgery is done in Italy or India and we are looking for financial assistance”.

Moyo went on to highlight that the major challenges faced by parents of children with Congenital Heart Disease are late diagnosis, lack of sustainable local solutions, lack of access to lifesaving surgery, lack of trained specialists especially in the southern region(Matebeleland), lack of access to affordable medication.

“Food security for most of these families is a major issue, some live off part time jobs and some are vendors. This lockdown is a major setback”, said Moyo.

Moyo passionately pleaded with Non-Governmental Organisations to assist with medication, food and funds for surgeries.

“We as parents are asking for donations from the private sector, NGOs and churches so that these children access medication, food and life saving surgeries. Our database has over 75 children with congenital heart disease,” she said

International Congenital Heart Disease is on the 7-14 February 2021

Those willing to donate the banking details below:

BRAVE LITTLE HEARTS

Bank :Nedbank
Branch :Belmont
Bulawayo

Accounts FCA) 11991262743& (RTGS/ZW) 11991262727

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