This
is the most lovely story of one of the patients we prayed for last week
and how God has been faithful to her in her life. It's a long post by
Anna, but definitely worth the time to read every single word. To God
be the glory!
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| Marietou. Three surgeries down, one to go! |
During my time aboard the Africa Mercy, I have immensely
enjoyed caring for each and every one of my patients! However, few have
captured my heart like Marietou. She came to the ship just a week or so after I
arrived in January. I briefly mentioned her a few blog posts ago, but she is an
incredible young woman and deserves a post dedicated solely to her and her
story. A few weeks ago I had the
opportunity to sit down with Marietou and her cousin Djeneba to learn a little
bit about her history and the path that has led her to the Africa Mercy. Marietou
currently has a trach and is unable to speak. Through Djeneba, a hospital
translator, and some creative charades, she and Djeneba were able to share a
little of their story with me.
Marietou was born in a rural village in Mali to a poor
family. She had no running water, electricity, indoor plumbing, or other modern
amenities. According to Marietou and Djeneba, she is one of many siblings and
had a very loving mother and father. When she was two years old she began to
have persistent fevers and head pain, most likely malaria. Her mother and father were concerned for
their daughter but had no way to take her to a doctor or pay for medical care.
Her fevers worsened. Then one day “the sickness began to eat Marietou’s nose.”
Marietou had Noma, a prevalent disease in this part of the world that mainly
affects small children who are malnourished and have an extremely weak immune
system. It is caused by bacteria that you and I may easily come in contact with,
but also easily fight off. It causes gangrenous lesions in the mouth and nose,
eventually leading to tissue death. Its estimated that 90% of children who get
Noma die. Noma has not been seen in the Western world or developed countries
since Nazi concentration camps during World War II. Because Marietou was
already sick and undernourished she was susceptible to Noma.
Marietou’s upper
lip and nose began to be consumed by the gangrenous infection. Her parents
still had no way to take her to a doctor or hospital. They tried common home
remedies such as putting boiled leaves on the infected tissue. The Noma
continued to eat away at her oral and nasal cavities. Her family traveled with
her for days until they arrived at the closest hospital. According to Djeneba,
they truly thought Marietou would die on the way to seek help. When they
arrived at the hospital Marietou was in serious condition. There was no way to
reverse the damage that had been done, but they could stop it by cutting away
to already infected tissue and treating her with antibiotics. Djeneba says that
the doctor cut away the remaining part of Marietou’s mouth and nose because it
was already “dead from the sickness.”
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Marietou before any surgical intervention, using medical
tape to cover the hole that opens to her nasal cavity |
Marietou,
although permanently disfigured, made a full recovery. She was left with a gaping hole in her face,
looking directly into her nasal cavity. This also left her more susceptible to other
infections. According to Marietou, her family showed her the utmost support and
love. This is somewhat of a rarity in her society where many physical ailments
are seen as shameful or as caused by demons and evil spirits. Sufferers of Noma
are often abused or shunned. Although
her family always treated her well and she suffered no abuse, she was unable to
go to school and seldom left her family’s compound. The outside world was cruel
to her, making her feel worthless and unloved.
According to Djeneba, Marietou was always very shy and closed off, even
to her family.
When Marietou was
a teenager a man who lived very close to her family came to her father and
asked if he could take her as his second wife. Plural marriage is very common
here. He needed another wife to take on some of the responsibilities of his
compound and care for children. Her father was extremely reluctant, fearing
that Marietou would be abused by the man and ridiculed by his other wives. The
man promised to treat her well and in lieu of his fears, Marietou’s father
agreed to the marriage. However, they agreed that Marietou would help in her
husband’s compound and do the required work, but that she would still spend
much of her time with her parents. Their fear of her being brutally treated and
abused prevented them from giving up their daughter completely. However, according to Marietou their fears
had been in vain. She says that her husband was always treated her kindly.
Since their marriage, Marietou has had three children.
Three years ago
Marietou heard of a non-governmental organization working in Guinea that might
be able to help her. She traveled from her native Mali to stay with her cousin
Djeneba in Guinea. The organization said they could help Marietou and prepared
to fly her to Switzerland for treatment. However, her treatment was delayed
because of the unstable political climate in Guinea at the time. It was very
difficult to get the required visas and governmental permission to go to
Switzerland. Three years passed and still Marietou was waiting. She had not
been back to Mali or seen her children. They remained in the care of her parents.
Then a doctor that worked with the organization heard that Mercy Ships would be
coming to Conakry, Guinea. The doctor had heard of Mercy Ships before and knew
that it was one of the few medical organizations working in Africa that did
Noma surgery on the continent, without taking the patients to Europe. He helped
Djeneba and Marietou travel to Conakry for the Mercy Ships screening this past
August. Marietou was scheduled for surgery!
As scheduled,
Marietou and Djeneba arrived at Mercy Ships in late December. Her first surgery
was not scheduled until February but they needed to arrive early to complete
some medical testing. A series of extensive reconstructive surgeries were
required in order to give Marietou a new mouth and nose.
Marietou was admitted
to D ward just a few days after I had arrived at the ship. She had been staying
at the Hope Center until her surgery date, but was admitted early with
persistent nausea and vomiting.
Apparently she had been suffering from frequent nausea and vomiting on
and off for the past few years. As I admitted her to the isolation room and
started an IV, it was evident even that there was something special about her
and her cousin Djeneba. Marietou weighed in at a mere 41 kilograms (90 lbs).
For someone of her height she was extremely underweight and needed some serious
TLC in order to get her ready for surgery.
At the beginning
of February Marietou had her first surgery. Using cartilage from her ribs and
skin grafts from her scalp, forehead, and thigh, the surgeon was able to
recreate nose and upper lip area. They then used a graft from her tongue to
create a palate, hopefully allowing her to speak normally after all the
surgeries are finished. Because of swelling and airway clearance, a trach and
feeding tube with necessary for Marietou. Patiently she waited for 21 days with
the scalp flap still connected to facilitate blood flow to her new nose and
with her tongue sutured to the top of her mouth. Her skull was exposed where
they took the scalp flap, and she endured painful dressing changes every other
day. She continued to have severe nausea and vomiting, requiring a J-tube, or a
feeding tube going directly into her small intestine and bypassing the stomach
to allow for better absorption. After 3 weeks she had her second surgery. This
time the surgeons disconnected the connecting scalp tissue from her new nose
and moved it back to its rightful place to cover her skull. Then they flipped
her bottom lip up and around, creating an extremely tiny mouth, but also
creating an upper lip where there was none before. 12 days later she had
another surgery, releasing her mouth slightly, but still leaving it quite
small. Her tongue is still sutured to the roof of her mouth. She still has a
trach and a J-tube. In 10 days she will
have yet another surgery to release her tongue and mouth completely, allowing
her to speak and giving her a normal shaped mouth with a bottom and top lip. At
that point her trach and feeding tube will be removed.
Through it all
Marietou has had an amazing attitude. From the very beginning, she was told by
Dr. Gary that it would be very, very long road, that it might seem worse before
it gets better, and that it wouldn’t be easy.
Her response to this was “I am willing to stay here as long as you are
willing to treat me.” Marietou was happy just to have the chance to receive any
kind of medical treatment. She was overjoyed to be seen and to be treated as a
human being. She had been denied that
basic right so often through out her life, and she had often been treated as
less than human because of her condition. The way in which we are treating her
physical ailment was obvious from the beginning, but what has been more
striking has been her emotional transformation. When she first arrived on the
ship she was incredibly ashamed of her face. She would always keep a piece of
tape over the hole where her nose should have been, and frequently covered it
with a scarf. She went from being quite and timid, almost afraid to speak, to
laughing, playing, and joking with the nurses and other patients. Her
personality has begun to shine! In the midst of all of the pain she has kept
such a good attitude. Of course there are good days and bad days, but you can
see her positivity each and every day. She can hardly move her mouth or face at
the moment, but you can tell when she is laughing at our attempts to make her
smile because of the way her shoulders shake up and down. Just yesterday we had
her out of her bed and she was dancing (to the Spice Girls)! Arms up in the
air, dancing! Today I stopped by deck 7 while the patients were outside and
found her pulling one of the nurses in a red flyer wagon! Even though we don’t speak the same language,
and very few of the translators speak her language, we have communicated much. She
still has a ways to go, but I am so thankful that I have been able to accompany
her on part of her journey. From the moment she stepped aboard the Africa
Mercy, it was clear that she was a strong woman, but her strength,
perseverance, and good humor has been a blessing to all of the nurses in D
ward.
Marietou’s cousin Djeneba also deserves her 15 minutes of
fame! Djeneba is 26 years old with a playful spirit and great sense of humor.
Not only has she been a joy to have on the ward, she has gone above and beyond
in caring for Marietou! For over two months she has slept on a mattress
underneath Marietou’s bed, helping care for her day and night. Only once in two
months has she left the ship! This girl deserves big time cousin bonus points. In all seriousness, the
selfless love that Djeneba has shown not only to Marietou, but to other
patients as well, has been an example to us all!
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| Djeneba! |
I will keep you updated on Marietou’s progress. She is
healing extremely well, but still struggling with some malnutrition issues.
Please keep her and Djeneba in your thoughts and prayers! I will definitely
post photos after she has her final surgery!
Thanks for reading!
