A Newborn's Resilience, The Love of a Mother, and The Commitment of a Team

By Maternal Health Consultant and Midwife, Leesha Mafuru

It was the morning of October 4th when Halima walked into our new maternity center carrying a tiny package bundled up in a colorful fabric, her newborn baby. She had a preterm delivery at another hospital in the area — not one baby, not twins, but triplets! Her triplets were very premature, born at only 27 weeks. Survival at 27 weeks is rare, not only in Tanzania, but even in developed countries. Sadly, by the time Halima decided to come to FAME, two of the triplets had already passed away. 

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The moment they arrived, FAME's nurses and doctors jumped into action, admitting Baby Patricia to our Special Care Nursery (SCN). She weighed only 1.98 lbs., but was clearly a fighter. These babies are known as micro-preemies and carry a huge risk for complications and mortality. Our Special Care Nursery is not equipped to provide the level of care typically necessary to save babies this fragile. However, there is a high-level NICU in Arusha that specializes in these cases (the only one in the country), so after stabilizing and evaluating Baby Patricia, our doctors recommended a transfer there. Despite being the best option for Baby Patricia, the cost of care there was simply beyond the family’s reach. They decided to stay at FAME and to reconsider only if Patricia’s health changed. 

FAME doctors and nurses kept watch over Baby Patricia as if she were their own, monitoring her feedings, fluids, temperature and oxygen levels 24 hours a day. In order to help her breathe, she was put on CPAP, a machine she stayed on for 6 weeks. It was a very steep learning curve for our team, and the NICU specialists in Arusha graciously provided consultation and advice every step of the way, as did a FAME volunteer pediatrician. Slowly but surely Patricia's weight started to increase and Halima was able to start doing skin-to-skin Kangaroo Care, expressing milk every two hours around the clock and learning how to feed Patricia through her oral feeding tube. 

As the days and weeks went by, her breathing became stronger and stronger, requiring smaller and smaller whiffs of oxygen along the way. The time spent skin-to-skin with her Mom only added to her amazing resilience. The team excitedly watched the thermostat on the incubator get lower and lower as Patricia’s own body developed some fat stores and was able to maintain its own temperature. Even her tiny little cheeks began to fill out. And then she reached 32 weeks or 8 months gestational age and began to suckle at the breast!

To her mother’s great joy, she was a champion nurser from the start. After weaning off the oxygen altogether, she graduated out of the nursery and into Kangaroo Care alone. Within just a few days days, Baby Patricia was finally ready to go home, weighing a healthy 5.6 lbs.

In the end, Halima and Baby Patricia were with us for two full months. For the FAME team, it was an enormous milestone — one that illustrates the power of teamwork, compassionate care, and commitment to learning. For this mother and family, there was no greater gift FAME could have given than to help this little one beat the odds and get to go home in her mother’s arms in time for Christmas.

We are so grateful to our supporters and friends for enabling FAME to have the resources and staff to care for Baby Patricia, the fragile but mighty little human who needed us. Be blessed this holiday season, in the New Year and always!

Note: Names of mother and baby have been changed to protect privacy 

The Long Road to Recovery

By FAME

Three year old Lemayian arrived at FAME Medical in visible pain. He was rushed to the emergency room by the FAME team, where they quickly learned from his distraught mother what had happened two weeks earlier. He had been playing tag with the other children when he bolted inside his home to hide. He collided with a pot of boiling porridge, which caused third degree burns over most of his body.

From there Lemayian’s road to recovery was a long and painful one.  He was rushed to a medical facility in Mang’ola near Lake Eyasi. However, as that facility was unable to provide the emergency care Lemayian required, he was transferred to a different medical facility in central Karatu. Shortly after being moved there, his relatives recommended he seek medical assistance at FAME instead, due to its reputation in the area for burn care.

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At FAME, Lemayian received multiple skin grafts and dressings for his burns —operations that are, unfortunately, all too common at FAME.  In 2019 thus far, burn dressings have been the second most common procedure performed at FAME. More than 40 dressings and five skin grafts have been conducted at FAME so far this year.   

 While the average inpatient stay at FAME is about three and a half days, Lemayian stayed with us for just under a month due to the severity of his injuries.  As he improved day by day, he became very popular and well-liked by FAME staff and our FAME dog Charlie.  His inquisitive and engaging little spirit, along with his stubborn perseverance,  had a special way of drawing people in.  In only a couple of weeks, he was walking again and exploring everything within his reach.

His mother Neema was kind and appreciative of the treatment we provided for Lemayian. “The treatment was wonderful because Lemayian received very fast care and treatment. I was very scared because the wounds seemed like they would never get better. I thank FAME Hospital and the doctors a lot for making this happen and allowing us to go home. We have nothing to give in return only that we pray for you all.”

Lemayian was looking better than ever when he returned to FAME several weeks later for another dressing change. It was deeply gratifying for our medical team to see him in such good spirits and to know that he has a new lease on life.

NOTE: The names of the patient and mother were changed to protect their privacy.

FAME Africa
Thank you FAME
Saying my final goodbye to our staff during our Friday lunch

Saying my final goodbye to our staff during our Friday lunch

By Kathrine Kuhlmann, Communications & Marketing Coordinator

I first joined the FAME team a little over a year ago as the Communications and Marketing Coordinator and, let me tell you, this is an extraordinary place. I know what you’re thinking: it’s my job to say that. The thing is, FAME makes my job incredibly easy. I get to share the stories of compassion, of lives saved, of hard work, and of the miracles that I see on campus every day. I also get to interact with our incredible patients and community. I get to know the dad who stayed with his son in our inpatient ward for months and we still greet one another when we see each other in town. I get to photograph a young Maasai woman who speaks neither Swahili nor English, but has survived Cerebral Venous Sinus Thrombosis and is now giggling with me looking at her image, happy and healthy. I get to share a meal with a mama who took in a child from our maternity ward when his mother passed away and celebrate with her when he’s beginning to crawl! I get to cry tears of joy with a father whose 13-year-old son can finally, for the first time, get consistent care for his epilepsy and begin to learn what it’s like to live a life with an effective treatment plan. I get to hear stories of tragedy and triumph, of sadness and strength, of death and life, and I get to share those stories with you.

There are certain sounds that echo through the halls that I’ll never forget from my time at FAME: the metronome-like consistency of a patient monitor matching pace with the heart of a critical patient, the sigh of relief and absolute bliss after a healthy delivery, the wailing of a mother who lost a piece of her heart unexpectedly in the emergency room, the laughter of a child who has recovered from his skin grafting and finally gets to go home, the stillness of campus after a long day. Working in the health sector is a daily challenge filled with these moments of both joy and sorrow, with incredibly tangible results: either the patient leaves healthy or they don’t. However, I’ve been grateful to see how, independent of the outcome, the FAME team uses each case as an opportunity to learn, to understand, and to build their treatment capacity.

Working at FAME has had a massive impact on me, and not just that I can keep up with a clinical conversation without Googling every other word or that I can see bodily fluids without spewing my own, but an impact on how I approach community development. I have never seen a hospital, in US or abroad, which is so attentive to each individual patient, acting out of genuine empathy. I’ve also never met a team so eager to learn from challenging circumstances, new patients, or specialty volunteers. During my time on the Karatu campus, I’ve gotten to work with our 157 member awe-inspiring, genuine, and selfless local staff and over 60 incredibly thoughtful, kind, and skilled international volunteers and I’ve learned countless lessons from them all. I’ve learned how to be an effective teacher, how to approach each day with joy and gratitude, how to make a hat out of a cloth napkin, how to hold on to hope, how to make the perfect chapatti and beans, how to be a good story teller, and, most importantly, how to be a life-long learner. To the staff, the administration, and the volunteers, thank you. Thank you for being my family, for loving the community of Karatu so well, and for making me a better person through it all. With all my heart, thank you.

FAME Africa
Coaching Management Skills

By Business Volunteer, Diane Berthel

William Mhapa and Diane Berthel

William Mhapa and Diane Berthel

This is my third trip to FAME and it’s like coming home.  As the first business volunteer, initially we were uncertain about the value I could bring.  Turns out supporting the management staff connects on every level for me and them. Sometimes I’m not sure who is learning the most!  They are surprisingly self-aware and a most eager and grateful group of students.  I get more than my share of wide eyes and big smiles when something connects.  I can see that, so often, they have already envisioned it at work with their teams.  It makes the work deeply satisfying and a wonderful learning experience for me.

On a macro level I improve the skills and, equally important, the confidence in their leadership and management.  The first year I was here for only 3 weeks.  I got to know them, earn their trust and ask what they needed.  I just had time for a couple of sessions on leadership styles. Discovering that their learning model was lecture and write down every word the lecturer says, I used lots of activity and small groups.  Although uncomfortable at first, they quickly took to the change.

I should say that during my first two weeks, I mentored the wonderful COO, William Mhapa, and made lots of rounds on the hospital campus to get to know all staff including housekeeping, gardening and construction workers for the new maternity center.  Working on my Swahili, I greeted everyone with Jamba and got lots of smiles and waves.  Eventually someone shared with me that “hello” was Jambo - not Jamba.  It turned out I had been saying “fart” to everyone for two weeks.  When I finally had a session and introduced myself as the Jamba woman it was instant chemistry. 

When I left, a common request for my return was coaching – both individual support and the skills to coach their team members.   On my second trip I coached nearly every one of the managers.  Understanding the barriers to the typical models we use here – cost and unnecessary complexity - I created a very simple model for our first step.  I asked them several questions, including, list everything they do in each day.  We then put each of their activities in a matrix to examine their effectiveness and success in building the skills of their team.  I quickly learned that to succeed with this, we needed to vision what their role would look like if they were not performing all activities.  That included what FAME could be in the future; how things like data collection and analysis would be a higher-level responsibility for managers. It helped them to see how building skill and competence in their team would allow them time for higher level work. 

For some departments, I did team building sessions to warm up their teams.  In these sessions we looked at stages that lead to team accountability and results orientation.  In her coaching session, one of the nurse managers asked how you reward team members for results if there is no money. We discussed selecting a team member who stands out in their contribution.  Then end a meeting recognizing their excellence and asking them to share their secret with the team – both rewarding excellence and creating a learning opportunity for the team. Eyes wide she raced from the room and I don’t doubt that she implemented that very afternoon.  A few hours later I received a text that said, “You make that my day be good!”

I’m back for six weeks and we have a full agenda.  Coaching follow-ups, with a focus on strategic planning and resource management, plus tools for communication and negotiation are at the top of our list.  Already three days in, the momentum is contagious! 

Your support is critical to FAME serving the rural people of Tanzania and growing as a model for healthcare in the developing world.  I’m thrilled to share anything that will inspire your confidence in this amazing group of managers!

FAME Africa
"There's No Word for Down's Syndrome in My Language"

By Marissa Anto,

Children’s Hospital of Pennsylvania Neurology Volunteer

 
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The new mama, Editha, tightly held her small six-week-old baby; only a tiny head visible, floating in a sea of pink ruffles from her dress collar and wrapped snuggly in a far too large fuchsia felt blanket. Just for context, it’s a balmy 80 degrees Fahrenheit outside. I notice baby Glory’s elongated almond eyes and immediately recognize the tell-tale sign of Down’s Syndrome. Before obtaining any history, I decide to examine the infant to confirm my suspicion. I find she has all the characteristic features including up-slanted palpebral fissures, transverse palmar crease on her hands, low-set ears, sandal gap toes and an increased skin fold at the nape of the neck. I start asking the young first-time mom questions about her pregnancy, the delivery and Glory’s first few weeks of life. Editha brought Glory in to see a neurologist at our mobile neuro clinic because she felt like the baby’s tone was low. Luckily, despite being small for gestational age (and with low tone), Glory was otherwise neurologically intact, feeding well and gaining weight. Yet I was concerned about her anterior fontanelle or soft spot on the top of her head because it was abnormally full and can signify hypothyroidism in a newborn. Hypothyroidism is a common hormonal abnormality that occurs in children with Down’s Syndrome and infants must be screened regularly for both this and blood count abnormalities as Down’s children also carry an increased risk for hematologic malignancy. Although Glory’s exam was largely reassuring, she needed to come to FAME ASAP for bloodwork (which couldn’t be done at her local clinic) to ensure she didn’t have any thyroid or blood abnormalities. Children with Down’s syndrome also carry a higher risk of congenital heart disease. Fortunately, Glory had a normal oxygen saturation and normal pink coloring without any appreciable heart murmurs. She would eventually need an echocardiogram or ultrasound of the heart to definitively rule out any heart defects.

As a pediatric neurologist, I am used to having tough conversations with families, explaining complicated and often distressing diagnoses. But how do you tell a new mom that her baby has Down’s syndrome when her language doesn’t have a word to describe the condition? In the United States, Down’s Syndrome or Trisomy 21 is fairly well-known to the public, with an estimated incidence of 1 out of every 700 babies born in the U.S. In Tanzania, this special population and the vocabulary used to describe them is virtually absent from mainstream society. I struggled to explain the condition and its common co-morbidities to Editha via an interpreter. Dr Anne tried looking up a Swahili word for Down’s but couldn’t find it. She asked one of our medical student interpreters, Abdulhamid, who also couldn’t come up with the appropriate terminology. I asked our social worker Kitashu, but he too said that, although he had previously seen some children with this condition, he had never known what it was called. Dr. Anne finally Googled a picture of children with Down’s and showed Editha, a look of understanding registering on her face. She said she now recognized what her baby has. 

Later that day, I searched online and found few posts on Down’s Syndrome in Tanzania. One was written by a mother of a child with Down’s Syndrome and was titled “There Is No Word for Down’s Syndrome in My Language.” In the article the mother details how there is no Swahili word to describe people with Down’s Syndrome and reflected that she had never known or seen children with Down’s Syndrome growing up in Tanzania. She speculated that families may have hidden children with Down’s or, even worse, completely neglected them due to the cultural stigma surrounding having children with special needs. She noted that there is virtually no data that exists regarding the incidence of Down’s Syndrome in Tanzania. The author of the article recounted that when her child was diagnosed with the condition, she unfortunately had very little support or guidance from the medical system in terms of what to do or expect for her child.

I wanted to make sure that this young mama before me did not feel the same way. I explained Down’s Syndrome to her and all the things we needed to screen Glory for at FAME. I explained that the baby’s fontanelle was full and that made me nervous, but the rest of her exam was reassuring. I gave precautions to return immediately should the baby develop any lethargy, vomiting, feeding intolerance or altered mental status prior to coming to FAME. Fortunately, Editha and Glory did come to FAME as instructed the following week. I was encouraged that Editha was able to make the two-hour journey to get her child the care she needed. Glory’s thyroid studies and blood count were both found to be normal. I reiterated all the things that would have to be routinely checked and what Editha should monitor for in baby Glory. I tried to reassure Editha that children with Down’s Syndrome can often lead very full, largely normal lives as long as their specific health care needs are met. Editha told me she only hoped that her baby would remain healthy and that she would do whatever she could to ensure this. This meant traveling two hours each way to FAME for a cardiac evaluation in a few months and making the long trip every time Glory needed blood work. I was reassured to see Editha so well-bonded to her baby, her affection and love obvious. She would do anything for this precious baby. And that is truly the most important thing a pediatrician can wish for any child but especially for a child with special needs.

 NOTE: The names of mama and baby have been changed to protect their privacy

 
NeurologyFAME Africa