Roshnee Dhaver, founder of the Dylen Dhaver Spina Bifida Foundation. A tragedy, the loss of my son born with Spina Bifida and Hydrocephalus is the driving force behind this foundation. There was a great injustice done to my son by the failing healthcare system in South Africa. My son was left to die due to negligence and lack of knowledge about these disabilities. Even though medicine has advanced so vastly in this era, South Africa is still very far behind in treating children with these disabilities.
Spina Bifida and Hydrocephalus is not given much support in South Africa and these disabilities go “unseen” both by society and the healthcare system. The mission of the Dylen Dhaver Spina Bifida Foundation is to create awareness and a support structure for these beautiful children. We want to raise funds to support the on-going treatment of these children. At the birth of this Foundation I have published two books about my sons’s journey in order to raise funds for this cause. Through the sale of these books I managed to raise some funds thus far, but this is a far cry from the medical costs that parents have to bear to obtain treatment for their children. The South African State hospitals are not equipped to handle the needs of these children and with budget restraints, they do not have bed space or operating theatre time, so these children are not a priority. In South Africa today there are only two State hospitals that can treat these children, one in the Western Cape and the other in Gauteng, where do the rest of these children go? How can parents afford the after care and on-going treatment of their children if they have to travel between provinces for a life-saving surgery or even to request a simple need such as orthopedic shoes? Only the ones with medical aid or financial resources have access to state of the art equipment, break-through surgeries and some of the best doctors in the country. The rest of them are left at the mercy of government hospitals.
Who makes the decision that one child’s life is more valuable than another’s?
Spina Bifida is a birth defect that occurs when a portion of a baby’s spine does not fully develop. As a result the spinal cord and the nerves that protrude out of it may be damaged. This defect occurs at the end of the first month of pregnancy and even before a mother knows that she is pregnant. Sometimes the defect causes an opening in the back which is visible and sometimes it cannot be seen and the defect remains hidden underneath the skin. Mild defects may cause few or no problems, while more severe defects can cause serious problems, including paralysis and the loss of bladder and bowel functions.The main contributing factor linked to Spina Bifida is the lack of the vitamin Folic Acid in the mother at the time of conception and during pregnancy. Folic Acid plays a large role in cell growth and development, and not having sufficient amounts in the early stages and during the pregnancy can increase a woman’s risk of giving birth to a child with spina bifida and neural tube defects. Some research indicate that genes play a role, but most babies born with Spina Bifida have no family history of the condition.
Asandiswa was born on the 26th May 2015. She was born with Spina Bifida and Hydrocephalus.Sanele, Asandiswa’s mother residing in Mpumalanga was transferred to a hospital in Witbank for the birth because according to medical staff at the hospital in her residential zone, they could not perform the C-section since Asandiswa was a breech baby. Sanele heard the word Spina Bifida for the first time when her daughter was born. Without any prior knowledge of the condition, Sanele searched for this condition on the internet and some of the information was very daunting to her. Far away from her home town Sanele had to stay with Asandiswa at the hospital until she had the surgery to repair the opening in her spine. Medical staff were not very helpful in explaining what the condition was, so Sanele was left to hope and pray.
Asandiswa stayed in hospital for a month before she could have the surgery to close up her spine because the hospital did not have operating theatre time and a neuro-surgeon to perform the surgery. Under normal circumstances a spina bifida baby’s spine has to be surgically repaired within 10 days after birth to prevent infection and further complications, but due to the lack of resources at the State hospital, she had to wait.
Asandiswa and her mum spent 2 months in hospital after the operation before they could go home.
5 years later this determined little girl thrived and against all odds started to crawl on her behind and eventually tried to stand with the aid of crutches. According to her mum doctors have informed her that she should not worry about the hydyrocephalus because its growth is slow. Although Asandiswe has tried her utmost to be an independent child, walking has become a painful experience for her so she cries and does not want to use the crutches. Asandiswe is on the waiting list for orthopedic shoes but she and her mum has to travel to Ermelo for the shoes. As Asandiswe grew, her feet has become bowed, a common trait with Spina Bifida and without physio therapy for 5 years her achilles tendons have become severed causing tremendous pain when she tries to walk. Another factor are her hips, spina bifida children’s hips can get disclocated over time due to the muscle imbalance around the hips.
Sanele is not aware of all the medical complications that her daughter will experience as she grows up, and without the necessary support of a team of medical experts such as pediatricians, pediatric neuro-surgeons, physio therapists and pediatric orthopedic surgens, Asandiswe will not be able to grow and live to her full potential.
We want to help Asandiswe to overcome the fear of walking. This fear developed due to the pain she endures everyday whilst trying to walk with the crutches.
We want her to walk tall and to continue being the Spina Bifida warrior that she is.
1. Asandiswe needs a consultation with a pediatrician in her region to monitor her progress and to provide medical expertise when needed.
2. A pediatric neuro-surgeon needs to be consulted urgently to monitor the growth of the hydrocephalus because at birth a “shunt” was not inserted to drain the excess cerebral fluid from her brain, and if not treated soon,can be fatal.
3. Asandiswe needs to consult with a pediatric orthopedic surgeon to determine the severity of the damage to her achilles tendons and her hips. She will need surgery to repair this.
4. Regular physio therapy sessions are required to help develop the muscles in her legs and to prevent the feet from becoming bowed again.
5. Lastly but very importantly, Asandiswe needs orthopedic shoes to assist her to walk pain free.
We have created a crowd funding campaign for Asandiswe. We are hoping to raise funds to provide her with a medical team. Kindly support our campaign by making a donation here : https://www.backabuddy.co.za/meet-asandiswe
If you are unable to donate please share this campaign with family and friends
The Dylen Dhaver SB Foundation's main goal is to provide support to children born with Spina Bifida and Hydrocephalus. These disabilities are not given much support from community and the state healthcare systems in South Africa. The main aim is to raise awareness and through education we want to create a platform where parents as well as the children can have their voices heard.
We want the Dylen Dhaver SB Foundation to provide that support, whether it is medically or emotionally. We want to use this platform to raise funds for these children so that life-saving surgery will not be one of the reasons that these children are neglected or left to die. We believe that the healthcare system needs to be pressurised to co-operate in devising strategies to increase rural and urban communities access to all kinds of specialisms. We want the support of people with bridge building skills that would certainly be an asset to any modern health and disability service.
We want the residential zoning for hospitals to be amended for these children so that they have the freedom to go to hospitals that are equipped to handle the conditions.
In South Africa there are only two State hospitals that are equipped to handle the medical care of these children. This needs to change, we want private healthcare organisations to come to the aid of these children and their parents as well.
A big thank you to our generous donors. Asandiswa is well on her way and has started physiotherapy, but she will require on-going sessions and eventually will need orthopedic shoes. Please help us to help this child to walk tall without any pain
Meet Tia, a 12 year old girl from Mitchell's Plain Cape Town. She is one of the fortunate children that is born with Spina Bifida and able to walk, however she has no control of her bowel and bladder and wears nappies. We are sponsoring her with nappies but she will require nappies well into adulthood. Help us to help this beautiful child to live with the dignity that she deserves!
WHERE YOU ARE
USE WHAT YOU HAVE
DO WHAT YOU CAN
DYLEN DHAVER SPINA BIFIDA FOUNDATION NPC
ACC NO: 21033448401
BR CODE: 462005
This book is dedicated to my son Dylen Dhaver.
My source of inspiration, my foundation of strength, my teacher of simplicity and humility
DYLEN DHAVER SPINA BIFIDA FOUNDATION NPC
ACC NO: 21033448401
BR CODE: 462005