Here I am

I believe all the photos in these slides are patients that have been seen by Mercy Ships in various field services. Our patients or not, they are all humans created by God. Please be mindful and respectful with regards to these images.

What is noma?

The name noma comes from the Greek word nomḗ, “the spreading of” and némō, “to devour.” Known by other names like cancrum oris/nasalis and gangrenous stomatitis, it is a “disease of poverty” meaning that the conditions for its appearance are due to poverty. Risk factors include poor oral hygiene, unsafe water, proximity to livestock, malnutrition, recent illness or immunodeficiency, and lack of antibiotics access.

Noma a rapidly progressing, opportunistic, poly-microbial gangrenous bacterial infection that’s been described in Hippocrates’ writings as early as 4th century B.C. Its prevalence worldwide has dropped only recently in the 20th century due to improvements in health, sanitation, and nutrition. In industrialized nations, it has completely disappeared with the exception of WWII Nazi concentration camps, where it ran rampant.

The World Health Organization (WHO) reports that between 100,000-140,000 people suffer from it annually, most of whom are children living in Sub-Saharan Africa. They also estimate that the reality is up to 700,000 people are affected worldwide each year, as they estimate only about 15% of people who have acute noma seek medical care. Left untreated, its mortality rate is approximately 90%.

The cause of noma isn’t fully understood, but it’s suspected that the bacteria that cause noma are likely those that normally live in the mouth (the mouth is a pretty dirty place). An opportunistic infection is one that is caused by bacteria that are normally present in the body but invade when “an opportunity” is presented (such as lowered immune function). These bacteria are often necessary to our own health, but keeping that balance is necessary and usually easily done with good nutrition and sanitation.

Progression

There are four stages of noma’s progression: acute → gangrenous → scarring → sequelae. Typically it starts as acute necrotizing ulcerative gingivitis (ANUG), leading to the loss of dental papillae, which begins necrotizing the tissue from the inside of the mouth.

The gangrenous phase is characterized by the flesh being destroyed by infection and tissue falls away. If the disease spreads through the cheek, lot of the cheek bone is exposed so it dies off and is destroyed as well, causing a lot of structural loss of the face. When the upper lip or cheek is involved, it can also destroy the nose.

Treatment for the acute and gangrenous phases mainly aims to sustain life and halt the progression of the disease. This includes fluid and nutritional support, antibiotics, and wound debridement to allow the body to fight the infection and limit further damage. If proper treatment is done at this stage, mortality drops to <10%.

After the infection has run its course, then the body tries to heal up the damage, replacing the damaged wound with scar tissue. Scar tissue has less flexibility than normal tissue, and so it can cause contractures which pulls the flesh and tissue close together. Without bony structures of the face, it can cause depressions in the facial structure and even enucleation of the eye. If the infection involved the cheek and scar tissue has covered the jaw, it can cause locked jaw.

You can see how the scar tissue over the cheek has “pulled” the right lower lid of the eye. In extreme cases, it can lead to total enucleation

The final stage is known as sequelae, or the consequence of the disease. The sequelae stage is the final state of the body after the disease has run its course and the body has done its best to recover. There isn’t any active infection at this point in time.

Surgery is only performed after someone has been in sequelae phase for at least 6-12 months. This ensures that the body has finished its soft tissue healing before any reconstruction starts to give the patient the best outcomes from the surgery. We don’t want to manipulate tissues that are not yet in their “resting state,” so to speak.

Treatment

Noma cases present several challenges for the team. Due to the unique nature of each case, reconstruction has be customized for each patient depending on what tissue is good and available for grafts. Fibroankylosis (scar tissue with reduced range of motion) can lead to anesthesic challenges like securing the airway. With many surgeries that require grafts or flaps, there are a lot of wound care challenges that present from the location of the surgical sites. There is also a lot of emotional, spiritual, and psychological healing that the patients and their caregivers need to go through as well from the long time that they spent being shunned from society or feeling like they needed to hide themselves to live or struggling to provide for their loved one. On the other hand, teaching these techniques to local surgeons can be difficult when they have limited resources and facilities available to them—a lot of pharmacies may sell fake drugs and sterile technique and good wound care may be almost impossible with the conditions that some of the hospitals are in.

The principle behind surgery technique is really amazing. The basic idea is to take a “flap” of tissue from a healthy place and shift it over to the damaged area and attach it. It’s still attached at the origin site, so blood flow keeps it alive and allows for new blood supply to form at the new site. When the graft is integrated well enough at the new site, the “tether” to the original site is severed and remaining tissue in the flap is replaced. For large flaps, the wound is kept “open” rather than grafted closed because the tissue will be replaced once the tether is cut. Since good blood supply is critical to the success of a flap grafting properly, there’s also a lot of blood loss when flaps are messed with. As such, flap surgeries tend to be our biggest blood consumers from a lab perspective.

The Abbe Flap, which uses other areas of the lip to reconstruct damaged lip. The red lines on the diagram indicates blood vessels. The top wedge is resected out and replaced with lip wedge from the lower lip in this example. While the lip heals and the body starts creating new blood supply to the wedge on the top (about 3 weeks), the wedge is left connected to the lower lip. Once healed, the connection to the lower lip is severed, and the small sections left are sutured together. Dr. Parker says you can apparently “borrow” quite a bit of lip on one side without it being missed after healing, about one third of the length.

The “Africa flap” was pioneered by Dr. Tertius, one of the Mercy Ships surgeons. It comes from the shape of the flap as it is borrowed from the side of the head. Having the flap originate from the side (rather than the forehead) makes any scarring due to the flap creation and replacement rather minimal since it is on the side of the head. It can be used to reconstruct parts of the nose and cheek on one side.

You can even use a “visor flap” to create lips and other structures when the disease involvement is bilateral (including a mustache for men if using a flap from the scalp).

There are a lot of really incredible reconstructions that the surgeons on board have done. It takes a lot of creativity for each patient to determine what flaps are optimal for reconstruction, and the patients are very resilient, having to go through multiple surgeries before the reconstruction is finished. Oftentimes the scar tissue is turned inwards to create the lining of the inside of the cavities. It’s not something I fully understand, but that method seems to be used often for instances where the infection has destroyed a lot of structures.

There is a lot more to treating noma than performing surgery. Dr. Gary shared this story about Hawa, one of the Mercy Ships patients from the 2003 Sierra Leone field service. She was born into a family that had three wives. (Many people are in polygamous marriages even before it was legalized a few weeks after I arrived in Guinea—which was a big source of discussion among day crew and ship crew.) Hawa contracted measles because she wasn’t vaccinated. She survived measles but due to its affect on the immune system, she developed noma, losing her entire nose, upper jaw, and internal maxilla. When she was 6 years old, her mother died and she was eventually taken in by her father as a fourth “charity” wife. Her first two children died at a young age, and she had two more children after that. Shortly afterwards, her village was attacked by the RUF army during the Sierra Leone civil war, destroying everything that she had left to hold onto. Hawa fled into the jungle with her two young children and survived for two years before finding a refugee camp, where she stayed until she heard about the ship’s arrival and the surgical intervention it offered for people like her.


Diagrams that helped explain the types of flaps that were used to help reconstruct the nose, maxilla, and lips.
You can see that the flap is left without graft (uncovered on right), as it will be replaced when her new nose is sculpted to the face and the rest of the flap is replaced on the scalp. Flaps require extensive wound care to prevent infection and other complications.
Dr. Parker said he struggled a bit trying to get the nose straight and that when the ship returns to Sierra Leone he’d like to help tidy it up.

Something that Dr. Parker asked when sharing Hawa’s story was something along the lines of: What do you do with the Hawas of the world? Giving them a hug and telling them that God loves them rings hollow. I think part of the answer lies in the surgical intervention and healing that Mercy Ships offers. These people know that people are fallen and there is sin—they suffer from the hands of it every day. They don’t know that there is hope and salvation, that the victory through Christ is already won. A lot of people out there don’t even believe God exists or that He has any care for them; if we can show that through the work we do, then I think that’s a worthy place to start.

A quote attributed to Hawa’s time aboard the ship: “I have never seen so much care and concern, and because of what I’ve seen and heard here, I know now that god does love me. I never knew that before. And I never knew what it felt like to belong. Now I do. And I want my story to be told so that other people can be loved and accepted too.”

3 thoughts on “Here I am

  1. Bravo again! I felt like I was right there! (well I was for some of it) Thanks for sharing who you are… your many gifts… your caring spirit… your zest for life… and your micro skills! Your T-shirt is great.

  2. I am rather curious to the term NOMA . Is it an acronym ? Nevertheless , from what I read , it refers to the parasitic infection destroying flesh figure ?
    Also, your tshirt design is great ! Very artistic! So interesting that your Mercy ship do have such dyes for coloring your tshirt . I bet you did have fun on the pool as well ! Keep up your cheerfulness ..,, God is with you all the time!

    1. Hi Mrs. Yeh, thanks for reading and your interest! The name noma comes from the Greek word nomḗ, “the spreading of” and némō, “to devour.” It’s actually a bacterial infection that gets out of control and destroys the surrounding tissue. I actually wrote a very detailed page on noma if you’re interested in seeing it. It’s the second page of this post, but you might have missed the link: https://a-hiding-place.com/here-i-am/2/

      Thanks for your prayers and support!

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