Sinazo gave birth to her little boy on an ordinary Tuesday, but for her it was a day of hope and expectancy. Imagine her pain when she discovered that her precious new born would have to spend the first few months of his life in an Intensive Care Unit (ICU) at the Red Cross Children’s Hospital.
Little Phawoluhle was born with a rare disease called Imperforate Anus. This means that he does not have an anus opening, so his body cannot get rid of waste functionally.
Within the first 48 hours of his life, Phawoluhle underwent a major operation. It would be the first of many. Doctors performed a stoma procedure to alleviate the blockages of his bowels.
A month later, brave little Phawoluhle needed a tracheostomy in his throat. The bones in his nostrils are so small that they block his airways. He also needed a gastrostomy in order to be fed.
This little fighter was really put to the test when he underwent a heart operation to repair the two holes in his heart a short while later.
After four long months in ICU, Phawoluhle is finally on his way to recovery. Sister Jane Booth, who heads up the Breatheasy Tracheostomy and Homecare Programme, and her dedicated team have been training his mom so that she can clean and maintain his tracheostomy when he finally goes home.
It has been a long road for Sinazo and she can’t wait to take her little boy home, where he belongs. He has already endured a multitude of conditions and procedures in the first four months of his life.
There is no known cause for the rare disease that he was born with, which affects one out of every 5 000 new born babies. Today, the 28th of February we celebrate Rare Disease Day which provides an opportunity to call on all researchers, universities, students, companies, policymakers and clinicians to do more research and to make them aware of the importance of research for the rare disease community.