Load shedding affects all families across the metro but for one specific Athlone family it is life-threatening.
Imagine hearing the doctors tell you to prepare for your child’s death. Imagine having to tell your other children that their brother might not make it. This is what the Moerat family went through after their son was diagnosed with achondroplasia.
Achondroplasia is a type of dwarfism. This is developed during pregnancy as the cartilage which makes up most of the skeleton during early development does not form into bones particularly in the long bones of the arms and legs.
While Shaheeda Moerat was pregnant with her son Raeed, in 2014, at eight months a scan revealed that his arms and legs had not grown as it should have. She was referred to a foetal clinic in Claremont where her son was diagnosed with achondroplasia.
Ms Moerat said this was a traumatic experience for her and her husband Ebrahim as everything had been fine before that. She said the news broke her husband who could not move after hearing it.
“We told my dad and when we came home our house was filled with family. We didn’t know what to say and what to do and we were both in shock. We, however, had to deal with it as he was due to be born two weeks later,” she said.
On Saturday September 6 she started vomiting and that brought on labour pains. Ms Moerat was rushed to hospital and gave birth via C-section. The baby was placed in the incubator and went home four days later.
She described Raeed as a happy, passive baby who was considered normal at birth. Doctors could, however, see the few symptoms related to achondroplasia.
At five months old Raeed’s grandmother noticed that his fontanel (soft spot on the top of a baby’s head) was raised. Tests from the paediatrician revealed that Raeed had fluid build-up on his brain and that he had to undergo surgery but could not because he had developed pneumonia.
Raeed was admitted to hospital for two weeks but in that time he had developed craniostynosis (a birth defect in which the bone in a baby’s skull grow tight around the base of the skull and spinal cord.
Raeed was left in a coma and permanently paralysed. Doctors told the family to prepare for the worst as there was no brain function and he was not recovering. Mr and Ms Moerat called their families in to explain the situation.
Doctors said that if Raeed had not shown improvement in the next two days they would switch the life machine off. The couple had to break the news to their two older children aged 5 and 2 at the time.
“My husband tried but we just couldn’t and my 5-year-old son said ‘just tell us is he dead?’ We just shook our heads. That night we returned to the hospital and as my husband stood over his bed and said ‘Assalamu Alaykom buddy’ his one eye opened.
“We immediately called the doctor and they said that we should not get too excited that it might just be a reflex but we were hopeful and holding on to anything positive.
“The next day we were more positive and on day five when my husband spoke to him we could swear that he was watching us and that his eye was moving,” she said.
On May 28 2015, Raeed had cranial decompression surgery with the odds being 30/70 and he also had plastic surgery done on his scalp.
He also had a tracheostomy tube inserted as he was unable to breathe on his own.
A few months later he started improving. During those months the neurosurgeon said that Raeed was deaf, blind, and that he was going to be mentally disabled.
This took its toll on the family and especially his grandfather, Ebrahim Boolay, who was generally a strong person.
Ms Moerat had been living at the hospital for three months to be close to her boy who was in the intensive care unit. One day when she came home to shower she realised that her father had died in his sleep after suffering a heart attack.
“My father was my strength; he was the strongest of all of us. It was devastating losing him but I had to go on and take care of my family,” said Ms Moerat.
After three months in the intensive care unit and a month in the specialised ward, Raeed was discharged. Ms Moerat was trained extensively to look after him but he soon contracted a bacterial virus which collapsed both of his lungs.
He stopped breathing and was rushed back to the ICU and was placed on an oscillator to reinflate his lungs.
Again doctors told the family that Raeed was gravely sick and that they should prepare for the worst.
The family celebrated his first birthday on September 6 2015 in the ICU. A few weeks later he came home and his health was touch-and-go. He is connected to a 24-hour portable life support machine.
When there is load shedding, which is at Stage 2 at the moment, the electricity source must be changed and the machine must be connected to an external battery which only lasts for six hours. When the electricity is back on the machine gets plugged back into the wall and the battery must be charged fully again.
“Because of the many times that the battery has to be used it isn’t able to last for six hours anymore.
Ms Moerat said this procedure must be done carefully because the power source is what keeps Raeed alive.
“We turned our house into an isolation ward and allowed no visitors because of germs. If one of us were sick we stayed in an isolated area so that germs wouldn’t travel in the house. We would sterilise everything every day as well as our hands. We always wore gloves and face masks,” said Ms Moerat.
She said that it had been difficult for her children to adapt to the situation as they once had a brother who could interact with them but is now confined to a bed and machine.
The family have strict rules about always being clean and they only kiss Raeed on his hands and not on the face. They all take extra vitamins and go for regular flu vaccines.
She said there were times that Raeed stopped breathing and she needed to resuscitate him.
Raeed who is 5 years old now was diagnosed with epilepsy last year. In 2017 his speech developed and now he is able to tell his mom if he is hungry, tired, cold, or in pain. He is now able to slightly move the left side of his body.
Raeed enjoys going out with his family in his specialised wheelchair and has a portable life support machine, but things such as the weather, flu or allergy season confines the family indoors to prevent Raeed from contracting an illness.
“We are always on high alert. It’s stressful and exhausting but I am a strong person and you do what you can as a parent. You have to do it because he needs you to do it and I have lots of help from my children and husband,” she said.
She said it is financially, emotionally and physically draining and people’s uneducated advice makes the situation worse. She said that people must learn not to park in disabled bays if they are able-bodied and said that many people buy illegal disabled stickers at shops and just paste it on their cars so that they can park in a disabled parking bay.
“We have a card that we have to renew every two years and have to pay over R200 for and there are people who just buy it at a shop so that they can park in disabled bays.
“If people could also please be more considerate and use the escalators instead of the lifts which disabled people need because of their wheelchairs it would really help,” she said.