I am a mother of two boys. The younger one is called Lwanele. Lwanele was born prematurely on the 1st of June 2017 at 32 weeks and was born with multiple birth defects, namely hydrocephalus, tracheo-eusophogal fistula, encephalocele and imperforate anus. He has had 3 operations so far. The first one was done to close the fistual and to connect his eusophogus and stomach, when he was just over 24 hours old. The second one was to create a stomma at day 6 of life. The last one was on 17 November 2017 to create an anus for him (named Psarp).
Lwanele had another MRI scan on the 12th of January 2018 to check his head and spine. His hydrocephalus has worsened and there's something wrong with his spine. We saw the neurologist and neurosurgeon on the 12th of February with the MRI scan results and they both decided that it is not necessarry to insert a shunt and/or to operate on the encephalocele at this stage.
Lwanele has had several chest infections which lend him in hospital. He was admitted on 10 - 24 January 2018 with bronchopneumonia. On the 24th of January he had his adenoids scrapped off and grommets inserted in the ear as he had an ear infection which didnt clear even after the antibiotics.
He also got admitted on the 28th of February 2018 - 9th March 2018 with another chest infection.
On the 21st of March 2018 we found ourselves having to take him the hospital again now with RSV (Respiratory Syncytial Virus). Lwanele had complications on the 24th of March and had to be transferred from Parklane where he's normally admitted, to BusaMed where there is a Paediatric ICU and where he's under the care of a pulmonologist.
During his admission at BusaMed, a CT scan of the chest as well as a bronchoscopy was done on the 28th of March. Lwanele's lungs were found to be badly damaged and his airways (larynx, trachea and bronchis) are collapsed/extremely narrow. Lwanele has always had noisy breathing and a hard time thriving as he most of the times coughs a lot and vomits when he is being fed. The bronchoscopy also revealed to us that his eusophogal fistula has recurred and some acid and food has been leaking into his lungs. After the CT scan and the bronchoscopy which were both done under an anasthetic, the doctor decided that he needed to be intubated/ventilated and fed only through the drip until his lungs got better. When Lwanele gets better, he will have to have an operation to fix the fistula as well as to open his collapsed airways. His colostomy closure has had to be put on hold due to his critical illness.
We need financial help to be able to pay for his medical bill short-falls and all the therapy which the medical aid is not covering. The medical aid always has short-falls and blatantly refuses to fund his out of hospital consultations with the special doctors and the physiotherapist/occupational therapist.