Be the change you want to see in your community
It was through the journey and loss of my Brave Little Girl, Rudo, in 2018, that birthed Brave Little Hearts Zimbabwe.
It began by me seeking justice on the treatment we encountered at the hospital that resulted in the negligent loss of my child’s life, and to honour the good fight that our Brave Little angel had put up. She had suffered greatly.
I tried to report my grievances to the authorities but my case was swept under the carpet and labelled as emotions of a grieving mom.
If I were to narrate the ordeal of the negligence I encountered and what went wrong in the hospital it would take many pages. But instead of drowning in pain I decided that to move forward. I had to be the change I want to see in the heart community. I did not wish upon anyone the horror and pain I went through and didn’t want my daughter’s memory to fade into mere emptiness. But I had no resources or finances to begin my project.
All I had was a WhatsApp group and a personal relationship with God.
Simple errors lead to tragic consequences
Student doctors provided wrong diagnoses and wrong medications, and it took more than three months to access typed medical reports from the hospital. I was told that the hospital did not issue out typed reports and that my baby book was good enough. In the southern region of Zimbabwe, where we live, as with most regions, we have no access to cardiac specialists or facilities. But a hospital in India was willing to treat my daughter and they needed the reports typed. The Indian doctor wrote endless emails to my child’s doctors requesting the medical reports. But the doctor would not send them, apart from a few incomplete records, which I had to pay for.
My daughter was so sick that she had to be kept at home on oxygen, and we had to buy several tanks each month. So it was heartbreaking when a nurse forgot to return my daughter’s oxygen tank after her stay in the ICU.
The day that is forever imprinted in my mind is the day she was to have an echo. We were told to remove her oxygen and go across the road to the children’s ward. It was drizzly and windy as I clutched my baby to my chest and covered her from the elements. After a 4-minute brisk walk, which felt like forever, we arrived at echo site.
There was a long queue and the nurse’s aide who was with me asked me to join the queue while she went to register my baby at the echo site. The plan was for my baby to be returned to the ward to be put back on oxygen as soon as possible, but the queue was not moving. I signaled to the nurse’s aide that my baby had been crying for too long and was turning blue, a clear sign of lack of oxygen. She told me that the secretary had said to remain in the queue. I asked if she had explained that the baby needed oxygen but she didn’t reply. So I left the queue and went to the secretary to plead my case but she said that no one had informed her that the baby was on oxygen. I pleaded with her that that she needed to be prioritised but she ignored me. She started shouting saying I should go back to queue. I had tears rolling down my cheeks as I went to the parent in front if the queue and asked her please to let me in ahead of her considering the condition of my little one. She took one look at my baby and gave me her place in line.
When I finally saw the doctor he told me that if a baby is on oxygen there was no need to wait in line. He told me to hurry back to the ICU right after the echo to put her back on oxygen, but the oxygen tank was not there. Such a simple error but one with such tragic consequences for me and my family. How could I possibly forgive?
I tried to put my grief behind and forget about what I went through. But each time I heard of another child’s death and recognized they had experienced a similar ordeal, I realized that I could no longer hide behind my pain and I had to DO something. Through God’s grace I realized that when I helped someone by just being supportive, through a hospital visit, a prayer, or a donation, that I was healing my own pain. And sometimes I just said “God if it was your will for my daughter to go through this so that I may help others in the same situation I will do whatever it takes.” That gave me strength and the faith to be the voice to stand up for myself and others, because my this child, who died at 10 months old of tricuspid atresia, changed my life forever. Until then I had never heard of congenital heart disease.
Brave Little Hearts Zimbabwe – our progress
Our aim is to promote awareness of congenital heart disease and a child’s rights through our 6 pillars:
1) Right to early diagnosis.
2) Right to specialist care.
3) Right to affordable medication.
4) Right to timely access life-saving surgery.
5) Right to nutrition.
6) Right to live.
We do this by advocating for:
- Fair and just policies for children living with heart disease
- Decentralized cardiac services to all provinces
- Government responsibility for supporting children living with this disease by creating local and sustainable solution
To date, in an effort to decentralize cardiac services to all provinces, we have started with Mpilo Hospital as our pilot project. We are in process of refurbishments to make it the first cardiac centre in the Southern Region of Zimbabwe. We have a long way to go but…together we can!