Children are not little adults.  And the truth is since they aren’t adults, they can’t vote.  But they can have a voice and eight-year-old Matthew Chase is just one example of that!  Matthew was born with hypoplastic left heart syndrome which essentially means he was born with half of a heart.  When he was only a few days old, he underwent the first of a series of surgeries to repair his congenital heart defect and now runs around like any other “normal” kid.  Well, not ANY kid.  Matthew, a budding philanthropist and entrepreneur, decided sick kids need all the help they can get so he started a fundraiser at his school in North Charleston.  He only intended to raise $2,000 but “accidentally skipped over it” to raise $3000 for the patients at MUSC Children’s Hospital.

I traveled with Matthew and his family, and other members of MUSC Children’s Hospital as part of the National Association of Children’s Hospitals Family Advocacy Day.  Children’s hospitals across the country bring a patient family to meet with their respective delegation and advocate for children’s health care.  Here’s Matthew’s pre-trip interview with the Charleston Post and Courier.

I had a picture in my mind of what the OR would be like here.  I expected a makeshift tent perhaps like on the set of the old show MASH, but was surprised to find an actual OR.  However, that is where my surprise ended.  Anesthesia is limited, equipment is close to non-existent.  I watched a patient wake up during surgery.  Our doctors taught Dr. Nuwas and the medical students how to remove a tumor the size of a baseball froma  seven-year-old boy.  This poor child had retinoblastoma – the tumor had ruptured through his eyeball.  The pain was extradorinary, and no doctors in Tanzania knew what to do for this child.  In the US, this malignant tumor would have been discovered quickly and he potentially would live a long life.  Here, the surgery was palliative, only serving to remove the tumor and give the child a few months with far less pain before he dies.

I meet the sweetest child, although I’m hard pressed to use the word “child.”  This seven-year-old girl walks through the patient ward carrying her baby brother on her back.  Her mother is in the hospital with a terrible illness and she must take care of both her mom and little brother.  I wonder who is taking care of her?  Yet, she sheds no tears, no whines.  This is her life. . .a life so different than the world we’re from with children crying at the grocery store aisle because they want a piece of candy or throwing themselves on the floor in a tantrum for yet one more toy.  She knows no other life and accepts her fate.  I can’t help but melt when she reaches for my hand and soon she is following me down the corridor.  I can’t resist so I give her a stuffed toy – a dog that barks when you press its ears.  For the first time, I see the child inside — she is the one grinning from ear to ear and laughing at the toy.  Over the next two days, she continues to find me and brings more friends with her.  Yes, I realize it’s not that I’m such a novelty, but the lure of gifts are great.

As I’m watching Dr. Golby teach Dr. Nuwas, a little girl comes up to hold my hand.  We can’t speak the same language but she smiles in the room — it’s a hospital room unlike any we’d enounter in the U.S.  Six to eight patients stretched out on beds in one room – no fancy, sophisticated machines.  Yet in some ways, the scene unfolded very similarly as back home.  Family members gathered around each bed, desperately waiting for doctors, nurses, anyone to tell them any news or information about their loved ones’ condition.

Different Yet So Much The Same

After chuch, we head to radiology conference where all the students and doctors study each case.  It gives them a chance to collaborate and also teach.  It is here where I have a brief encounter with altitude sickness.  (Haydom sits on a plateau in the middle of the Great Rift Valley at an altitude of over 5,000 feet) My head starts to nod off, the way it did back in school when you were terribly bored from a class but trying hard to look interested.  Yet, it had nothing to do with boredom.  I had plenty of sleep, but quickly realize that I haven’t been drinking any water and we’re at a much higher altitude and my body is adjusting.  I head to my room to grab a bottle of water and end up sleeping for an hour not by original design.  I am now separated from my group and am unsure of where to go.  But I’m assuming a group of Americans will stand out rather quickly.  I accidently find out that “operating rooms” is not understood in Swahili and are instead called “theaters.”  I finally find Alex who is rounding on patients with Dr. Nuwas in what is called the “old ward.”

MUSC Dr. Patel teaches Dr. Nuwas during radiology rounds

Doctors and students study medical images

President Obama’s ties to Africa may reside in Kenya, but Tanzania is just as proud to claim him.  When discovering I was from America, Tanzanians immediately shared their enthusiasm about Obama’s leadership and their hope that change is on the way!

The first of many billboards featuring President Obama

Maybe not a billboard, but this time an apron!

My passion in life is to be a mom and whether that happens biologically or through adoption has absolutely no bearing on how much I will love that child.  I have struggled with the decision to visit an orphanage during my time in Tanzania.  I fear I will see these beautiful, neglected, malnourished infants desperately in need of a home — and yet, I so wanting to be mother, can do little about their fate.   I’ve heard it can take many years to adopt from Tanzania and not something the community regularly supports.  We’ve passed dozens of orphanages along the way from Arusha.  Many rundown from the outside, and most of the children orphaned due to AIDS and other diseases.  If at all possible, the hope is to reunite the child with extended family members.

During a tour, Dr. Patel and D Word discovered that Haydom Lutheran had an orphanage.  At this point, there’s no turning back.  How could I be so close and walk away?  Reality and perception are two such different states.  These infants, these orphans, are so loved by the women who take care of them at the hospital.  True, I think they would all be much better in a home environment but these children are not lacking in love and warmth.  The Tanzanian women who work in the nursery let me hold and feed each infant a bottle.  I don’t want to leave, but know that I will come back . . . maybe not today, but soon.

My heart has found a home in Africa

I met Etta, a beautiful young girl from Norway. Her parents are volunteering at Hayom for a few months. After school and on the weekends, she goes to the orphanage to play with all the children. For her all of 10 years, Etta is a wise soul with a big heart.

We wake up at 7 a.m. in time for hospital rounds.  This is when all the Tanzanian medical staff, the Norwegian doctors, Dr. Olsen (the chief medical officer) and volunteers regroup to talk about the overnight cases.  Also an introduction for why Madaktari/MUSC was here and what we would be doing at Haydom Lutheran.  Obviously Dilan is no stranger here, but the rest of us were “newbies.”

Haydom may be a rural referral hospital, but it has more than 400 beds.  The hospital servies more than 450,000 patients as a first referral and more than 2 million as a secondary referral.  Dr. Oystein Olsen’s grandfather along with the Norwesgian Lutheran Mission founded the hospital in the 1960s.  At the time, the hospital was the only thing that existed in the village. About eight percent of the hospital’s budget is funded through the Tanzanian government, 55 percent from the Norwegian Government and the rest from patient fees and donations.

Haydom Lutheran's Entrace

Dr. Patel, Dr. Ellegala and D Word heading to the hospital

Hospital Rounds Commence

Now that rounds are over, we hurry to mass which is a daily part of life at Haydom Lutheran Hospital.

Church at Haydom

Dr. Olsen introduces the group before church starts

An hour after arriving to Haydom, we got the rules from Dilan — skirts and long pants for women, pants no shorts for the men. It’s a Lutheran Hospital run by the Norwegians. For a moment I panicked. When we left Arusha, Brennan and I had to leave behind part of our luggage for space. Did I leave my pants/skirt behind? Ah, relief! After digging through our few clothes, we found what we needed.

We headed on a walk to “Mama and Baba’s” house. Everyone who has had a child is called “mama” Mama is turning 60 today. Dilan is like an adoptive son to their family and when Dilan met his future wife (from Holland) working at Haydom Lutheran Hospital, Mama, Baba, and Dr. Naman all coordinated the wedding day plans – - location, music, food, etc.

Happy Birthday Mama

Dr. Patel learns how to count to 10 in Swahili

Mama's about to get a surprise

I think I'm in love!

My roomate Dr. Alex Golby from Harvard Brigham's

Mama gets a birthday kiss.

A night I'll never forget. Wonderful friends. Mama is a great cook and this little girl is cute as a button.

Brennan teaches a budding new photojournalist