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Heart Kids South Africa is a registered Non-Profit Organisation founded by parents of babies and children who have been diagnosed with Congenital Heart Defect(s).
On average, 1 in 100 children is born with Congenital Heart Defect (CHD). It is the number one birth defect in the world and yet it rarely is spoken about. Many of these defects have no known cause and living with such a diagnosis can generally entail repeat heart surgeries and life-long monitoring of the child, by a range of medical specialists. Congenital means it is present at birth and the word defect speaks for itself.
Our main focus at Heart Kids SA is to create awareness around CHD’s and to support families along their journey. Our cause is aimed at saving lives, as many children live with an undetected heart condition which unfortunately results in their death. The more families we can reach and educate around CHD, the better equipped they will be. Living with a child who has a heart condition can at times feel like a lonely road, and we ultimately want families to understand that they do not have to endure this challenging journey on their own. Every child deserves to be taken care of and deserves to be nurtured into becoming a productive adult. Pediatric care is not a luxury treatment but a life-saving treatment. Sadly, a very small percentage of our population can afford the treatment. As a result, many children die a death that could have been prevented.
Just a few things that Heart Kids SA assists with :
Educating parents about the signs and symptoms of CHD. We liaise with sonographers and have our brochures in their rooms. The brochures explain in detail the signs and symptoms to look out for in order to establish whether there is a possibility of a CHD present. Supporting parents when they receive the news. Often parents beat themselves up about this, perhaps ignoring the symptoms, (in other words, they are in denial) or they are not realizing the severity of the disease. We walk alongside these parents and help them to come to terms with what the disease is going to entail for them and their families. We come alongside these parents and walk the journey with them. We encourage parents that have been affected to speak about it. Often people do not understand the complexity of CHD. The more they speak about it, the sooner they come to terms with what the journey entails and the more awareness is being created.
An important function is directing parents to sources of support. We have mentors in hospitals as well as Whatsapp groups they can join for support and information. We also make parents aware that it can affect every relationship one has ever had and how to deal with it. It is not an easy journey, and is often an emotional one. Quite often the parents have other children. The CHD child demands all the attention from the parents and parents tend to forget that the other children also need their attention.
Sadly, as in my case, we also deal with cases where the child passes. Families react differently when this happens. In some cases people have the opportunity of spending time with the baby before he/she passes, in other cases, the baby passes suddenly. We assist all family members to cope with the grief by means of having face-to-face contact.
Pictured below: A get together in Gqeberha
Heart Kids also celebrates the survivors.
CHD week, which is from the 7th – 14th Feb, and September is heart month. We have family fun days in the different provinces.
This gives parents the opportunity to share their stories of hope, to encourage one another and the children get to meet other CHD children.
As part of our Awareness campaign, we are hosting a walk in Gqeberha on the 26th of February. The awareness walk will be along Summerstrand beach, starting and ending at Shark Rock Pier, it is a 5km walk and everyone is welcome. Details for registration can be found on our website heartkids.co.za or contact no. 071 149 3570 or email info@heartkids.co.za Charlotte Lombard - Heart Kids SA You can also find us on Facebook.
1 in 100 children will be affected by CHD, many of these children are not diagnosed early enough, the families feel totally inadequate and unsupported. IMAGINE if we could reach EVERY family and child, and support them, direct them to resources and walk their journey with them. Not only would we save the lives of children, but we would be able to extend a lifeline of hope to those that feel hopeless.
After all, children are our future.
We NEED your support, we need your voices, and we value the time you give to our cause.
OUR NEEDS :
Currently, we are trying to raise funds for the building of a mother’s lodge at Dora Nginza Hospital. Quite often mothers travel a long distance to bring their children for much-needed surgery and in most cases, they do not have a place to stay whilst the child is in hospital. Statistics have proven that the presence of the mother speeds up the recovery process. This building would be housing 10 mothers at any one time.
Contact – Charlotte Lombard (021) 685 6747 or 071 1493570
Banking Details: Standard Bank Rondebosch A/C No: 27 060 1708
