Hi, I'm LwaneleI'm an awesome survivor, so are you!
I was diagnosed with VACTERL association. I live with a number of rare conditions that make me different from most of you. Some of these conditions cause me pain, others cause me delays, some may make me appear weird but I’m not. I’m just a blessed boy with an uplifting story to tell. Read along.
Hi, I'm Lwanele
I was diagnosed with VACTERL association. I live with a number of rare conditions that make me different from most of you. I’m also a blessed boy with an uplifting story to tell. Read along.
Share, Inspire and Change Lives.
Let me introduce myself I am Lwanele. I was born in June 2017 with a whole lot of special conditions and have been diagnosed with VACTERL association. This is a disorder that affects many body systems. VACTERL stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities. People diagnosed with VACTERL association typically have at least three of these characteristic features. I have a little bit more than that.
I have undergone at least 4 major operations and a number of other procedures in the months I have lived. I still expect to go for more in the coming months. Thankfully, most of my surgeries have not needed redoing.
From birth I stayed my first 51 days in the Neonatal ICU during which time, I had two operations. The first one, to fix Esophageal atresia (EA), when I was just 24 hours old. Yeah, you got that right, my esophagus wasn’t connecting to the stomach.
The longest I stayed in hospital in was stretch was a long scary five months from March to August, 2018.
I face my challenges head-on, smiling, laughing and screaming where i need to. Thanks to unceasing prayers and love from caring family and friends as well as the efforts of a super team of doctors and other medical practitioners. Challenges still come, TEAM LWANELE will face them as they do.
Here's My StoryWe came this far by faith
It’s been long months, but I’ll share, just in brief; my journey of faith,
perseverance, hope and triumph.
June 2017. We all were small once.
Thinking of Scalpels
Nov 2017. A day before the PSARP.
Been There, Done That
May 2018. A few hours after the Nissen Procedure.
Celebrating this sitting thing.
October 2018. A miraculous happening. Who ever knew. God’s hand supporting me on all sides, a loving team of physiotherapists and lessons from big brother.
Get yourself a branded Lwanele T-Shirt and/or other memorabilia.
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Battle Hardened and Going On
Lwanele was 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 now up to the end of March 2019. He may need the same service beyond then.
Back in Hospital October and November 2018
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 was admitted again at Mediclinic Sandton, this time for incessant vomiting and a collapsed lung from 22 November to 14 December 2018. The doctors managed to avoid a redo of the Nissen Fundoplication. He’s been home ever since, with isolated bouts of vomiting but, jovial as ever, turning round and round in that little prison of a bed.
By the way, he has started speech therapy as of the 21st of January, sponsored by the Marian Rose Foundation. The therapists need to work to restore mouth function considering he hasn’t fed through his mouth since May 2018. Also he’s getting assistance in channelling his parrot-style mimicking. We believe this is a beginning of great things to come in this exciting and, at times, tense journey.
The little warrior takes a lot of medication in his home regimen. The last quotation for a month’s supply sat at R25 000, always varying with each month and per doctors’ advice.
Medical Aid only covered part of his medical bills including some of the medicines in 2018 However, 2019 has come with new rules, as it stands only two of his lot of medicines are covered as “chronic”.
Efforts to have the entire lot covered seem to repeatedly hit a hard rock.
Additional to the hospital bills and medicines, Lwanele needs; a specialised home-based care giver, occupational and neuro-physio therapy.
Visits to these professionals get cumbersome for him given he is still heavily reliant on the high-flow oxygen equipment in his home. The therapists charge extra for home visitation. Further to that, he needs to be regularly seen by his paediatrician, dietician, neurologist, neurosurgeon, pulmonologist, general surgeon as well as the ENT, a sure strain on finances.
In his 20 months 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 against 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 email@example.com
SOME PROCEDURES I’VE GONE THROUGH
ONGOING TREATMENT AND OTHER INTERVENTIONS
Specs for Myopic Astigmatism
Continuous. I need the glasses but I hate the way they irritate my face, worse with the eye patch. But I’m told they will help me avoid surgery.
As a dedicated sensory seeker I give the OT the hardest of times. But, we continue with therapy once weekly.
Suction and Posterior Drainage
After long months of not using my mouth for eating, I have realised this speaking, chewing, and swallowing thing is a non-starter. So I’m getting help once every week.
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+27 76 718 3964