We’re thrilled that Morgan and Chelsea are with us for two months, and rather than keep all of their contributions and insights to ourselves we’ve asked them to share parts of their experience here on the TTLF blog. To start things off, here’s Morgan’s account of her relationship with a baby boy who recently passed through the safehome:
THE SAGA OF POOF (by Morgan Benson)
This morning, Phoofu left for Queen II Hospital in Maseru. TTL brought his mother and the mother of another TTL safehome client, Nthabiseng, here for the night before both babies and mothers joined a group going into Maseru from Mokhotlong hospital.
Phoofu was the first new baby to arrive at the safehome since I did three weeks ago. I am an undergraduate student from Notre Dame spending eight weeks at TTL this summer (…or winter here). After I spent a week settling in and getting used to all the faces in the safehome, a new one arrived. Phoofu did not have the weeks or even months of TTL’s care that the other babies did. He was tiny with frighteningly bloodshot eyes from living inside a smoky rondaval. And there was something else about his eyes.
They shook. They didn’t follow anyone or anything. They simply moved quickly from side to side wandering around the room. I asked one of the bo’me what this new baby’s name was. “Poof!” was what I conceived her response to be, so I said it back. After the laughter subsided, she handed me his bukana and I realized it was Phoofu (Pofe-oo). Well from then on he was Poof to me.
I held him when I accompanied Me’Mamosa to the hospital soon after he arrived. She explained to the doctor that he was referred to TTL because he was “abnormal.” He also had a very large soft spot on the back of his head that she wanted to check out. The doctor told her to avoid traumas to the head, but other than that, he was fine. But as Phoofu spent more time at TTL eating well and being cared for, it was clear there was something else different about him.
We looked forward to when Dr. Chris from BIPAI (Baylor International Pediatric AIDS Initiative) would come in the next couple weeks to get his opinion. During that time, Poof and I bonded. He began to make more noise and smile more- one of the cutest smiles I’ve ever seen, almost always preceded by a look of deep confusion or frustration that erupts into pure goofy joy. But during that time we also began to notice more issues with Phoofu.
At 10 months old, he couldn’t sit up by himself and wouldn’t hold his head up properly. When Dr. Chris finally came to TTL to check up on some of the little ones, I again got to hold Phoofu as he confirmed our suspicions that Phoofu has Down syndrome, in addition to hypotonia (low muscle mass) and severe eye problems. Though it was comforting to see him spending time on Phoofu, examining his eyes, legs, torso, and head, even noting to us the high arch in his mouth consistent with Down syndrome, I knew this was bad news.
I tried to figure out what this really means in a country I don’t know and a culture I am still so unfamiliar with, but I didn’t find anything encouraging. One report described the chances of a child with Down syndrome in rural areas of Lesotho reaching adolescence as “slight.” However, this was largely because of the medical care available. This is when TTL is so vitally important.
When Phoofu’s caregivers noticed something wrong, they were able to contact TTL. Now Phoofu is on a 5-hour drive into Maseru to see a disabilities specialist with his mother. I don’t know what they will be able to do for Phoofu and his family, but TTL is ensuring that he is going to the best place he can and will continue to provide Phoofu and his family support.
I’m not sure if I will get to say goodbye to Poof in the safehome before he returns to his village with his family. I’m not sure what his future will look like, living with a condition that can cause so many health problems. And I’m not sure if his family is in a position to provide him with the care he will need. But I do know that TTL’s committed outreach team will do everything they can for Phoofu, and for that, I am proud to be spending my summer learning from them.
The TTLF Fellow is a representative of the North American organisation The Tiny Lives Foundation. Based for one year in Mokhotlong, Lesotho, the TTLF Fellow serves in an administrative support capacity for the Basotho charity TTL.