Lwanele Sibanda – VACTERL Association

Lwanele Sibanda

Lwanele`s story:

“Lwanele Sibanda is a special little boy who was born with multiple birth defects and chronic lung disease. He was born prematurely at 32 weeks via emergency C-section weighing 1.6kg on the 1st of June 2017. While in utero I was told that he had ventriculomegaly/hydrocephalus, this is a condition in which the Cerebrospinal Fluid (CSF) fills up the brain ventricles and the structures within the brain become larger than normal. As a result, the large ventricles can inhibit the proper development of the brain. This diagnosis took away all the joy that comes with being expectant parents as my husband and I literally spent day and night Googling about this condition.

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 – this is a communication between the trachea and oesophagus and whereby the oesophagus is disconnected from the stomach. For this he had to be operated on when he was just over 24 hours old.   
  2. Imperforate anus – this is whereby the baby is born without an opening to the anus. He had to have a colostomy created for him when he was 6 days old, which he is still using.
  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.

His general diagnosis is 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 (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 for him.

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 we 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 we thought we’d 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 his time to check what was causing Lwanele’s recurrent pneumonias and the source of his wheezing, coughing and feeding struggles. He found out that Lwanele had laryngomalacia and tracheobronchomalacia. That is a condition where the airways are flaccid and floppy. From his analysis he came to the conclusion 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 so as to give him a break from all the work he had to put in to breathe. The Pulmonologist also stopped all mouth feeds and he 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 has 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 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.

Development wise Lwanele is behind in his milestones but he has definitely defied the odds and proved to us 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 has recently started pulling up to stand and can walk while holding onto things. He has lots of falls but that doesn’t stop him from standing up again and again.

DAILY REGIMEN:

1. PEG feeds 3 hourly of wholesome, blended and liquidised foods

2. Loads of 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 13 meds.

3. Colostomy bag care

4. Home nursing services

THERAPIES

1. Speech therapy which he gets once a week, courtesy of The Marian Rose Foundation.

2. Chest physio which he gets as and when needed to try and clear the secretions from his chest as he easily gets those stuck in his airways due to his collapsed airways.

3. Neurophysio provided by the same therapist who does his chest. We have sent a motivation to the medical aid requesting for 2020 funding and we are unsure if that will be approved.

4. Lwanele desperately needs Occupational Therapy. The last quote we got in September 2019 was R651.40 per session and it was recommended that he should get OT at least every second week. A request was sent to the medical aid but it was ignored. We are still noticing more and more that he needs OT as he is suffering a lot with sensory processing issues.

MEDICAL NEEDS AND CHALLENGES

1. Lwanele’s primary care doctor is not a GP as they wouldn’t know what to do with him. He is a very complex child. So he’s seen and monitored by a Paediatrician who works hand in hand with a Paediatric Pulmonologist. But the challenge is that the medical aid does not cover these consultations. The consultation fee for the paediatrician is R1 625.00.

2. He sees his Paediatric Neurologist at least 3 times a year but medical aid does not cover these consultations as well. On his last visit to the Neurologist in September 2019 the consultation fee was R1 300.00. He has another appointment coming up on the 23rd of January 2020 and we do not have such money.

3. Due to his neurological defects, his eyes have been affected and we need to take him to an Ophthalmologist. The particular doctor we were advised to see costs R1 500 for the initial consultation and R600 thereafter. We managed to get a sponsor in December 2019 for the initial assessment but unfortunately Lwanele didn’t cooperate and it was difficult for the Ophthalmologist to check his eyes. So the plan is for this to be done under anaesthetic sometime early 2020.

4. From time to time Lwanele gets sick and needs to be admitted and we have a challenge when it comes to the Sandton Clinic as the medical aid is not contracted to that hospital, but due to him already having a good team of doctors there, it gets really impossible for us to change and move him to a new team. So then for continuity of care we have to get him admitted at Sandton Clinic each time but unfortunately the medical aid imposes a R6 400 co-payment for all admissions which we have to pay from pocket.

5. Transport to the doctors/hospital as we do not have a car.

6. Then the final and most challenging is his medication. As already mentioned, Lwanele uses 13 medications in his daily regimen. The medical aid only covers his anti-seizure medication in full, his antibiotic 3 bottles instead of 4, his two bronchodilator sprays – only one is covered partly and has a co-payment. The rest in his list we have to cover out of pocket!

UPCOMING OPERATIONS:

  1. To correct the encephalocele at about 4/5 years of age;
  2. Colostomy reversal – date to be advised;

OTHER NEEDS:

  • GROCERIES: This can be anything from peanut butter, to fruits, to basic groceries which includes wholesome foods that we blend for Lwanele. His diet consists of starch, a protein and some vegetables. All that is blended finely and fed through the PEG.
  • Diapers – size 6 pampers/Huggies/Cuddlers or whatever brand you may have.
  • Wet wipes/bum cream/cotton balls/head to toe baby wash.
  • Hand sanitizer/hand wash.
  • Domestos
  • Fabric Plaster to hold his oxygen and sensor in place.
  • Water resistant sleek plaster to hold his colostomy bag in place for a bit longer.

We have a website that has detail about his birth defects, daily challenges, daily needs, the procedures/operations he has gone through etc. Kindly go to www.lwanele.me for more detail.

All help in any form will be very much appreciated.

Yours sincerely,
Chelesani Sibanda, Lwanele’s Mom.”

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.

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