By Team Lwanele
Lwanele is a 2 year old boy born on 1 June 2017 with multiple birth defects. These defects have led to 4 major operations in the first 12 months of his life. Lwanele was born at 32 weeks, weighing 1.6 kg with the following birth conditions:
- Imperforate anus (no anus)
- Encephalocele (malformation of the skull, leading to leaking out of brain fluids)
- Hydrocephalus (water in the brain)
- Tracheo-Bronchomalacia and Laryngomalacia (flaccid windpipe)
- Tracheo-Eusophogal fistula (abnormal connection between the trachea and the oesophagus)
51 days in the Neonatal ICU
From birth he stayed his first 51 days in the Neonatal ICU, during which he had two operations. The first was to fix esophageal atresia and the second was the colostomy procedure.
Posterior sagittal anorectoplasty (PSARP)
He had another operation when he was 5 months old, to create an anal opening for him (PSARP). He went home for a while.
Lwanele was then readmitted on the 10th of January with suspected bronchopneumonia and was taken to theatre for grommets and adenoids. The latter was expected to ease his wheezing and snorting as well as open up his airway so as to make his feeds more comfortable. The wheezing continued and he still had it bad during mealtimes when he went back home.
29th of February 2018 saw Lwanele being admitted again for what was still believed to be pneumonia and was discharged on the 9th of March after another bout of antibiotics, and aggressive chest physiotherapy.
ICU at Busamed Modderfontein
On the 3rd “bronchopneumonia” admission he was in quite a bad state and had to be moved to ICU when his frail lungs seemed not to be coping at all. He was admitted into ICU at Busamed Modderfontein on the 24th of March 2018. Here scans and other tests revealed he was infact suffering from aspiration pneumonia. Both his lungs were collapsed as such urgently needed to be on ventilation and intravenous feeding.
While at Busamed Modderfontein a broncoscopy revealed that Lwanele had the tracheoesophageal fistula recurring and needed corrective surgery as soon as he was stable and fit enough. The same was scheduled for Sandton Mediclinic. The scans also confirmed the doctor’s fears that he had tracheomalacia which could require an aortopexy. This is a pretty invasive and high-risk operation.
Sandton Mediclinic Paeds ICU
On transfer to Sandton Mediclinic Paeds ICU on the 10th of April another bronchoscopy was done on him to confirm the tracheoesophageal fistula. Miraculously the scopy and another that followed two weeks later came out negative and he was spared that particular surgery.
A swallow study conformed his laryngomalacia and a constriction at the site of the earlier TOF surgery. The tests resulted in him having an esophageal dilation, Nissen operation as well as a feeding peg operation on the 10th of May.
After the operation Lwanele struggled a lot with lung secretions and sweats during the peg feeds. Lab tests revealed a drug-resistant Acinetobacter-baumannii infection in his airways. He is still taking colistin through nebs alongside other antibiotics to try and deal with the stubborn bug.
Discharged on 30 July 2018
Because of his collapsing airways, Lwanele was discharged on high flow oxygen and other equipment. He left hospital on 30 July, going home for the first time in 5 months. He was also granted 24/7 home nurse care which has been renewed twice up to the end of October. He may need the same service beyond then. He also needs continued chest physiotherapy even at home with home visits by therapists every second day.
Back in Hospital
Despite all current efforts and insanely paranoid hygiene precautions, Lwanele had to go back and be admitted in hospital for 9 days in October 2018 for pneumonia. He is currently back home in his quasi-ICU, enjoying the newly discovered ability to sit.
The little warrior takes a lot of medication in his home regimen. The last quotation for a month’s supply sat at R4000. Medical Aid only covers 3 out of 13 of his medication. Efforts to have the entire lot covered seem to repeatedly hit a hard rock. Additional to the hospital bills and medicines, Lwanele needs to be seen by his primary care doctor, (paediatric pulmonologist), which the medical aid does not cover; and needs to be seen by an eye specialist.
Lwanele receives speech therapy (courtesy of The Marian Rose Foundation), has physiotherapy (which the medical aid pays for 1 session per month even though he would benefit from more sessions).
He also needs to be seen by an occupational therapist as he has recently been diagnosed with a sensory processing disorder. He also stays on oxygen and has a specialised home-based caregiver which the medical aid is covering.
In his 2 years of life, Lwanele has proved to be a strong fighter, battle-hardened and seeming to love life. A life that should be given a chance to hear this tale given to him in his teenage years and well into adulthood. A story of hope in despair. A tale of how humanity chipped in to defeat odds and support a young life’s battle and victory against all odds.
To know more about Lwanele contact +27 76 718 3964 or email firstname.lastname@example.org