Fighting for her life and space on earth

JOBURG - Thandiwe Mathibela writes about cerebral palsy.

Becoming a parent for the first time was really an exciting, life-altering moment for me.

I gave birth to my daughter, Nombuso, five years ago. Little did I know that I could never have been prepared enough for what was to come.

At about 36 weeks into my pregnancy, my gynecologist suggested that I take injections to boost my unborn baby’s lung capacity as there was a chance I would need to deliver her sooner than anticipated as her growth seemed to have slowed down. My water broke at 37 weeks resulting in me having to have an emergency C-section.

My baby girl was born weighing a minuscule 1.4kg. My little princess needed to be resuscitated and was then immediately sent off to neonatal Intensive Care Unit (ICU) for special attention.

After some hours, both my gynecologist and the pediatrician explained to me that my daughter had suffered substantial brain hemorrhage (bleeding) resulting in brain damage. She was therefore diagnosed with cerebral palsy.

After making it through a very rough first night of her life, my daughter was determined to fight for her life and space on earth. Eventually, after a very long seven weeks in ICU and only weighing 1.8kg, my daughter was discharged from hospital and for the first time in her life spent a night at our home.

Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. Often the injury happens before birth, sometimes during delivery, or soon after being born. Physical symptoms typically appear in the first few years of life. Infants with cerebral palsy are frequently slow to reach developmental milestones such as learning to roll over, sit, crawl, smile or walk.

At five years old, Nombuso does not crawl, she does not walk nor talk, and she can’t feed herself and is still in diapers. There is, however, a long list of things she can do – she can see, she can hear, sits unaided for a brief moment, she communicates both with her body and behavior and she is very much in tune with the environment around her. It has been a tough journey and very hard to accept that my daughter may never be able to do some of the functions that I take for granted.

I hope to use this platform to encourage and inspire not only parents who have children with special needs and disabilities, but everyone else.

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