Lwanele Sibanda, is a special little boy who was born with multiple birth defects which have led to chronic lung disease, myopia and global developmental delays.
When Lwanele’s mom, Chelesani, was pregnant when she was told by the doctor that Lwanele had hydrocephalus. Hydrocephalus, also known as “water in the brain”, is a condition where there is an abnormal build-up of CSF (cerebrospinal fluid) in the cavities (ventricles) of the brain. The build-up is often caused by an obstruction that prevents proper fluid drainage. As a result, the brain ventricles and the structures within the brain become larger than normal which can then inhibit the proper development of the brain. This diagnosis took away all the joy that comes with being expectant parents as Lwanele’s parents spent day and night Googling about this condition.
Lwanele was born prematurely at 32 weeks via an emergency c-section, weighing 1.6kg on the 1st of June 2017. At birth, more problems were discovered in addition to the hydrocephalus which was diagnosed in utero, and these are the additional conditions:
1. Tracheoesophageal Fistula (TOF) – TOF is an abnormal connection in one or more places between the oesophagus (the tube that leads from the throat to the stomach) and the trachea (the tube that leads from the throat to the windpipe and lungs). Normally, the oesophagus and the trachea are two separate tubes that are not/should not be connected. His TOF repair was done when Lwanele was just over 24 hours old.
2. Imperforate anus (IA). IA is an abnormality present at birth, and characterized by the absence of the normal opening of the anus. Elimination of faeces is not possible until surgery is performed. So Lwanele had an operation to have a colostomy when he was 6 days old and is still using it.
3. Encephalocele – this is a neural tube defect characterized by sac-like protrusions of the brain and the membranes that cover it through openings in the skull. This defect is caused by failure of the neural tube to close completely during foetal development.
Because of these characteristic features that Lwanele was born with, his umbrella diagnosis is called VACTERL Association.
Lwanele had to be ventilated immediately after birth as he couldn’t breathe well. He had in total 51 long days in the Neonatal ICU. A few days after birth he had seizures and has been on anti-seizure medication since then.
When Lwanele was five months old he had his third operation, Posterior Sagittal Anorectoplasty (PSARP) whereby an anal opening was created.
In January 2018, Lwanele had serious issues feeding and breathing. He didn’t thrive or gain any weight and he often used to wheeze, cough and vomit. He had to be admitted for what was thought to be bronchopneumonia. He stayed two weeks in hospital and had his adenoids scrapped as the ENT specialist assumed that was the cause of his wheezing. Unfortunately the scrapping of the adenoids didn’t improve anything. In February 2018 he went back to hospital again as he hadn’t improved in terms of feeding and breathing. He spent another two weeks in hospital.
21 March 2018 he got sick again and and his parents had to take him back into hospital. This time his wheezing and feeding had worsened than ever before. On the 24th of March his condition deteriorated such that his parents thought they would lose him. He had to be transferred to Busamed Modderfontein to their Paeds ICU. He was under the care of a Paediatric Pulmonologist who took Lwanele for a CAT scan and also did a bronchoscopy.
He discovered that Lwanele had laryngomalacia and tracheobronchomalacia. That is a condition where the airways are flaccid and floppy, so his airways collapse with every breath. His conclusion was that these were congenital anomalies which were never picked up at birth.
He also noticed that Lwanele’s lungs had totally collapsed due to aspiration of food and vomit. So all the time he was treated for bronchopneumonia he actually was suffering from aspiration pneumonia. After the CAT scan and bronchoscopy, the Pulmonologist intubated/ventilated him. The Pulmonologist also stopped all mouth feeds and Lwanele depended on TPN and drips.
Aggressive treatment was done to help recuperate Lwanele’s lungs. After he stabilised, he was moved to Sandton Mediclinic on the 10th of April 2018. On arrival there he was placed in their Paediatric ICU and kept on high flow oxygen and continued with TPN.
After a few days he had a swallow study. The swallow study showed that he wasn’t swallowing safely and the food was getting stuck at the epiglottis and also at the site where his oesophagus and stomach were joined. It also clearly showed him aspirating and that he had severe reflux. After that test his team of doctors sat and discussed way forward after which they concluded that he should get a nissen fundoplication and a gastrostomy feeding tube. That operation was done in May 2018. Since then he’s still feeding through the PEG.
Due to the harm to his lungs Lwanele could not be weaned off the oxygen. He had a lot of challenges that included gagging and sweating after the operation in May 2018.
Hence he really had a long hospital stay. He finally went home after 131 long days on the 30th July 2018 with a home nurse, a PEG (for feeding) and oxygen (in addition to the Colostomy that he’s had since he was 6 days old).
He’s had a few hospital admissions due to his lungs and breathing issues since then. And at times he would still vomit through his nissen fundoplication which should not be happening.
Lwanele is developmentally delayed in all his milestones but he has definitely defied the odds and proved to his family and all those who are following his journey that nothing can stop him!
He can clap, sing, dance and say a few words like “mama, daddy, hello, bye, high-five, thank you” and he can count 1 – 10. He also calls his own name and his brother’s name (though he doesn’t seem to have meaning of anything he says).
He pulled up to stand and walked while holding onto things just before he turned 2. He has lots of falls but that doesn’t stop him from standing up again and again.
Lwanele’s needs include medication which includes:anti-seizure, anti-reflux, antibiotics, probiotics, immune boosters, nebulised medication, some nasal and bronchodilator-sprays, supplements (Vit B6 and Iron). In total he gets about 8 meds daily. He also needs to attend speech therapy, Neuro-physiotherapy and Occupational Therapy.
Lwanele’s parents also need financial assistance to take him to his specialist doctors which include the Paediatrician who works hand in hand with a Paediatric Pulmonologist, Paediatric Neurologist at least 3 times a year, Paediatric surgeon and dietician.
His neurological defects have led to myopia and he should be seen by his Ophthalmologist on a regular basis.
- To correct the encephalocele at about 4/5 years of age;
- Colostomy reversal – date to be advised.
Supporting the Arms of Mercy bracelet initiative is great way to get involved and make a significant difference in little Lwanele`s life. Together we can change his world, one bracelet at a time!
Fundraising for Lwanele Sibanda
Mighty Warrior Bracelets for Lwanele; consisting of navy wooden beads with crystals – and a Butterfly, Love, or Sword-with-bell charm. To place an order, contact the agent in your area or shop online. Alternatively, please consider a donation; any and all donations welcome.
Mighty Warrior BraceletsR35.00