Pulane Ntsie

The hardest thing about the NICU is leaving there every day and not taking your baby with you, and one of the hardest things about it, is actually being able to take your baby home from the NICU. The most unnatural feeling for me was going home every day and leaving my daughter in the NICU. I would always sit at home and wonder: was she hungry, cold, or scared? I drove myself crazy for 2 months worrying about these questions.

Mbali was born at 29 weeks via an emergency C-section. She had to be resuscitated when she was born and that caused damaged to her kidneys and caused bleeding in her brain. The kidney damage was managed with medication, but the bleeding would have repercussions over a year later. She also had a poorly developed gut, which meant almost everything she ate she would almost immediately vomit. I was told breast milk would help and be healthy for her. Unfortunately, I couldn’t produce any milk. I tried everything from pills to strange home remedies, but I could never pump more than a few drops. That’s where some of the guilt came from. I couldn’t feed my own child I couldn’t do something that all mothers should be able to do.

The NICU was such unpredictable place. One day I would come in and they would tell me Mbali slept well through the night and the next day they would tell me she had stopped breathing through the night. The fear was so debilitating that sometimes, before driving home I would sit in the car for hours and cry before I went home. I had to be brave for the rest of my family and not let them see my fear. I felt like I had no right to complain because so many other families left the hospital empty-handed, and at least my baby was still alive.

Finally on the 22^nd of January 2019, I was told that I could take Mbali home. It was the most exciting day of my life, but undoubtedly the most terrifying. Was the doctor sure she was healthy enough to go home? Were they sure I would be able to take care of her? She was still so tiny. Would I be able to take care of her? One of the first things I remember Rene saying to me is

“Don’t worry, you’ll do fine.” To be honest, I didn’t believe her. She gave me so much advice and all I could think was: I should have a pen. Funny enough all the things she told me were easy to remember when I got home.

There was a lot of work we still had to do when we got home. She had a lot of delays compared to her peers. I never thought I would have to teach her to roll over. That’s one of the things Rene helped us with. She was behind on crawling, so that was something else we needed help with. Without occupational therapy, there are so many things we would have just thought would come later. We wouldn’t have known that there are so many things we can do to help her. I’ll always be thankful for that help.

January 2020, Mbali had to go to the hospital for the first time since leaving it the year before. She was diagnosed with epilepsy as a result of the bleeding she’d had after birth. That caused more delays in her development and occupational therapy, Rene, stepped in to help us in deal with that. She gave us information and advice on how to help Mbali catch up.

On one of our visits with Rene, she realized that there was something wrong with one of Mbali’s feet. She advised us to go see an orthopedic specialist. He diagnosed Mbali with cerebral palsy or CP as it is called in general.  CP is an umbrella term for many conditions where the brain’s wiring and firing changed due to injury to the brain.  This may involve one limb or up to all four limbs, depending on the injury to the brain. She couldn’t walk very well, and I feared she never would be able to. That was another scary moment. Rene also told us about another doctor who could help her with her walking. The doctor prescribed orthopedic insoles to help her with her walking. Today, she hardly ever sits down.

On one of our visits to René, we realized that Mbali’s inability with fine motor

activity might be due to impaired vision.  But, there was also a solution for this obstacle.  We went to see an ophthalmologist who confirmed that Mbali’s vision was impaired, but that this could be rectified by wearing glasses. 

By going to Rene’s we also realized she was lagging behind with her speech. She now goes to speech therapy twice a month, and what a difference it has made.

Rene has made such an impact in our lives, that whenever Mbali reaches a milestone, everyone in our family insists that we tell her about it. I personally, feel like I owe her a lot. She was a God-send. Even if our circumstances had been ‘normal’, occupational therapy would have been an asset.