Struggling to Survive: Samwel’s Story

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In early 2015, Agnetta Muhawenimana gave birth to her first son, Samwel, who was unexpectedly born with a cleft lip. The extended family, many of whom worked with Agnetta at their small family farm, gathered at her home in anticipation of Samwel’s arrival. But instead they all sat in silence and feared for Samwel’s life.

Samwel began to lose weight because his cleft lip hindered his ability to breastfeed. Food was already scarce for the large family, and Agnetta did not know if her frail son would survive. After several weeks of trial and error, Agnetta discovered that she could feed Samwel breastmilk with a spoon, and he began to put on weight.

When Samwel was six-months-old, Agnetta heard a local radio host describing free Smile Train sponsored cleft surgery in Rwamagana. Agnetta knew this was her chance to provide Samwel a second chance at life, but she could not afford the transportation costs, as Smile Train’s partner hospital was 100 miles away. She decided to go door-to-door, asking to borrow money from neighbors until she had enough to cover the bus ride there. She would worry about how she was going to get home later.

In August of 2015, Samwel arrived at our Smile Train partner hospital in Rwamagana, and since he was at a healthy weight he was approved for free cleft lip surgery. When he came out of surgery, Agnetta said, “Bless all of the people who have given my son a new tomorrow.” After the local medical team was told about the family’s financial problems, Agnetta even received a small grant to cover the cost of transportation back home.

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Sometimes It’s Hard

Kigali, RwandaSmile Train Program Manager, East Africa, Dr. Esther Nyambura Njoroge sent us this very touching account of a mother and her a newborn daughter who came in for free cleft surgery.

This week am in Rwanda for a Smile Train outreach. Smile Train is a charity organization dedicated to offering Free reconstruction surgery for cleft lip and palate babies. We are going to change peoples lives here, one smile at a time.

So this morning I [walk] into the hospital, all ready to be my usual charming self, and I go about reviewing the patients who have shown up today. Looking into their hopeful faces, one cant help but feel emotional-even the very cold-hearted. Patient one to ten are fantastic-right age, no obvious infections, ready for surgery after some lab tests. Then I reach patient 11 and my heart lurches. I will call her Tammy*. She is a beautiful little girl and am sure she will be a show stopper some day. She is very tiny and has an NG tube-this is a tube that is passed from the nose to the stomach for delivery of food or milk when someone is not able to feed for one reason or another. I remember how delicate a procedure it used to be to fix those back in ward 3D (Kenyatta National Hospital). Basically the tube ensures that food reaches its destination.

The mother is beside herself, a very sad look on her face. I inquire about the baby and learn that she is only 28 days old, and the tube was fixed at the hospital she was born at. The mother bursts into tears and mine follow. I step back and look away-surely a patient should not see me cry! Since I started working with cleft babies I find my tear threshold has shifted significantly, I guess it comes with the job description. When I regain my composure I ask her why she is crying and she retorts in a torrent of Kinyarwanda that I surely cannot understand. The nurse with me translates — her husband left her the day Tammy was born and has not returned since. She is all on her own with her two children and she pleads that we help her baby, if only so that the bread winner of her home can return. He blames her for the deformity, saying her body was impure and thus the resulting baby. His family shunned her and she had to move back with her mother, a great disgrace in her community.

Tears sting my eyes again but I resist. I think of my own daughter and am broken. Am broken because Tammy is too young for surgery yet. We cannot operate on her now due to safety issues. But, there is a lot we can do for this mother, we can give her hope and this is part of my job. So I patiently talk to her and the nurse translates in the language Tammy’s mother understands best. Together we counsel her on feeding the baby, and the reasons why we should wait until Tammy is three months old. Slowly, as we repeat the information over and over, her face brightens and I notice a change in the look in her eye, she is hopeful. Tammy will have her surgery in two months time, and that look will definitely change to joy. I know it.

At times like this, it’s really hard…but we march on changing the world one smile at a time.

*Tammy is not her real name.

STOP Clefts Rwanda

Kigali, Rwanda — Smile Train’s STOP Clefts initiative recently concluded it’s first phase of activities in Rwanda. STOP Clefts is a program to jump start potential new local partner hospitals in countries and regions that do not have a local team already using established Smile Train partners in bordering countries/regions.

Euginie and Patience after Patience's free Smile Train cleft surgery

The team provided 146 free cleft surgeries.

In conjunction with the University Teaching Hospital and the Ministry of Health’s public health specialist Dr. Bonaventure Nzeyima, one of Smile Train’s partners in Kenya, Help a Child Face Tomorrow provided training to local doctors and 146 free cleft surgeries.

Deeply religious, when Euginie and her husband’s baby girl was born with a cleft lip, they named her Patience — believing that patience in their faith would make her whole. Their strength and fortitude was rewarded as 6-month-old Patience received free cleft lip surgery at University Teaching Hospital.

Smile Train patient Sitefano Niyibizi before free cleft lip surgery

While Patience was spared a life of ridicule and torment, Sitefano Niyibizi endured for 60 years before he could get his cleft lip repaired. He lost hope long ago since he never had the money to travel to the city and see a doctor. When he learned about the university’s bus collecting patients in his village, Sitefano dropped everything and hopped on board.. After his cleft surgery, he told the team “If I die today, I will die happy. Thank you for this gift.”

Check out more pictures at our STOP Clefts Rwanda facebook gallery.

Report from Rwanda: Doctors Needed

A member of our staff returned today from a trip to Rwanda, Africa, where she got to check in on our partners there and see first-hand the work they do. Here’s what she had to say:

“This part of Africa is beautiful: green hills everywhere — everything is green — goats, cows and chickens just wander by the dirt road.”

“Contrasting with this beautiful scenery is the crushing poverty. Every day kids ask us for pens; all they want are pens. They wear torn, dirty clothes and shoes. People here wear American castoffs.”

I saw my first cleft surgeries in person yesterday: a great experience. I finally got to see, in person, the result of the hard work everyone puts in at Smile Train. During rounds this morning the patients looked great. One man, a forty year-old former professional athlete, barely looked like he had lived with a cleft for forty years of life just the day before.

“The cleft backlog in Rwanda is huge: many of our patients this week were adults. At least 15 of the 37 surgeries performed this week were on patients over the age of 18.

“Also, 15 patients were transported to Gitwe last night from the Kigali Operation Smile mission. The Operation Smile team screened about 500 patients in two days. They have this incredible assembly line screening process that is great to watch. You cannot imagine what screening 500 patients in two days looks like. Every time I looked outside I kept thinking that the crowd would get smaller and smaller.”

“It never did.”

“There just aren’t enough doctors here to perform
the work required.”

Everywhere Smile Train goes there are different challenges but without a doubt the biggest obstacle in Africa is the lack of qualified doctors to perform surgeries.

A donation you make today can help us train a doctor, nurse or anesthesiologist in a place that desperately needs them.

Your contribution will help change the lives of millions of children and help ensure a child born with a cleft has the same opportunities as one born without.