Friday, November 1, 2013

Patient Story: Emmanoel

Elodie refuses to sleep. She wants to be up in case her son wakes. Tonight, her hair is pushed back, and she keeps one hand on her son’s leg at all times. She has to be exhausted; yet, she is acutely alert. What is it about mothers that “kicks in” on long nights like these?

If not for his surgery this morning, Elodie’s son, Emmanoel, would have died by suffocation before his third birthday. A tumor in his mouth cut off his airway to the point that he was passing out three times a day. Emmanoel’s shallow and labored breathing sounded like a perpetual asthma attack. Every breath he took made those around him feel restless and eager to do something – find an inhaler, an EpiPen, an ambulance . . . anything.

In the last year and a half, Elodie and her husband, Maurice, had tried everything. At first, doctors told them that their infant son had “just malaria.” But, as Emmanoel grew, his breathing worsened. In early 2013, they took him to Kinshasa, the capital of neighboring Democratic Republic of Congo. It was there that doctors identified the culprit – a tumor growing from Emmanoel’s palate was slowly suffocating him. He needed an operation, they said, but it was not a surgery that they would do.

With each day after their return home, Emmanoel’s intermittent breathing worsened, and he began losing consciousness. His blackouts became so regular that Elodie no longer rushed him to the hospital. Maurice also stopped sleeping at night because he was afraid Emmanoel would suffocate before the dawn.

Maurice and Elodie were out of options and resources, and their son was almost out of time. Now losing consciousness three times a day, they feared that, eventually, he would pass out and not wake up again.

Soon Maurice was no longer the only one up each night – Emmanoel could not sleep either. His body would wake him up, gasping for air. The result was a sleep-deprived, short-of-breath toddler sitting in his weary father’s lap.

Between sleepless nights at home, Maurice worked in Pointe Noire’s shipping port. On a hazy Friday in early August, he saw an unusual ship pull in – it was rumored to have a hospital onboard.

Maurice, Elodie, and Emmanoel were brought to the front of the line on Selection Day in Pointe Noire, Congo, after Emmanoel passed out and required assistance from the Mercy Ships Emergency Medical Team on-site.

 

For the next three weeks, Maurice and Elodie counted down each day until Mercy Ships doctors would begin seeing patients. That day came on Wednesday, August 28th, when Emmanoel and his parents waited in a line of more than 7,300 people to be seen by Mercy Ships. Before Emmanoel reached the front of the line, he had already passed out at least once and required the attention of the Mercy Ships Emergency Medical Team.

Emmanoel was scheduled for surgery onboard the Africa Mercy, and, within a few days, he became one of Mercy Ships’ first patients in Congo. “I don’t know how he survived this long; I really don’t,” Dr. Mark Shrime, Emmanoel’s surgeon, said during the operation.

Dr. Mark Shrime (USA), Dr. Gary Parker (USA), and Dr. David Levy (USA) during Emmanoel’s operation. “I don’t know how he survived this long; I really don’t.” Dr. Shrime said during the operation on September 4th.

 

In his adult-size hospital bed, two-year-old Emmanoel looks even smaller than usual tonight. He’s hooked up to lots of beeping machines. Elodie sits at his bedside like a determined watchdog. Maurice has gone home for the night to care for Emmanoel’s older brother and sister. During rounds this evening, Mercy Ships surgeons and nurses huddled over Emmanoel’s bed. “See all of these nurses?” a crewmember asked Elodie. “He is in very good hands. You should try to get some sleep.”

Elodie nodded in the direction of the comment but kept her focus on Emmanoel. The translator laughed, “No, I don’t think she will do that,” he said in English. But there was no need to translate Elodie’s disinterest in sleep. The tenacity of parents with sick children is the same in every language.


 

The night after Emmanoel’s surgery, Dr. Mark Shrime (USA) checks on Emmanoel with Dr. Michelle White (GBR) and nurse Deb Louden (AUS).

Dr. Mark Shrime (USA) checks Emmanoel’s palate post-operation.

Elodie, Emmanoel’s mother, watches vigilantly at his bedside.

 

Emmanoel has never been able to speak. When he had the tumor in his mouth, he could only make certain noises. He called Elodie “ch-ch-ch.”

“I can’t wait to hear my son say my name,” Elodie says. Perhaps the hope she has for the future is the source of her “motherhood adrenaline” tonight . . .

That night was the last sleepless night for Elodie. Today, she is well-rested and energized by the sound of her child’s voice. In three weeks’ time, Emmanoel has become a different child, smiling on the dock in the arms of his doting parents. With each day, Emmanoel continues to heal and grow and breathe. He has learned to say three words in French, starting with mother and uncle. He isn’t able to say father yet, but Elodie insists that Maurice doesn’t mind. Instead, Maurice is happiest to hear Emmanoel say the word demain, which means tomorrow.

Tonight, as the sun sets over Congo, Maurice and Elodie will sleep soundly once again . . . because their child will live to see tomorrow.

 

Elodie and Emmanoel, just two weeks after Emmanoel had an operation to remove a tumor from his mouth.

Maurice and Emmanoel after surgery. Emmanoel can now say three words in French – mother, uncle, and tomorrow. Maurice is still working on teaching him to say father, but he doesn’t mind the wait. He is just happy that Emmanoel can breathe again.

Emmanoel will celebrate his third birthday in February 2014 thanks to a life-saving operation that removed a suffocating tumor from his mouth.


Mercy Ships volunteer crew member Dr. Michelle White (GBR) was the anesthesiologist during Emmanoel’s surgery

Emmanoel heads home with his mom in Pointe Noire, Congo.


Story by Catherine Murphy

Edited by Nancy Predaina

Photos by Josh Callow, Ryan Cardoza, Catherine Murphy, and Michelle Murrey



Side note from Suzanne: I remember this little guy from screening day. I remember taking his pre-op photos. His father brought him to the photo station. He was sitting on the bench waiting their turn for the pictures, breaking off tiny bits of the apple we had provided with the lunches. It took so much effort for Emmanoel to choke down those tiny pieces. They both looked exhausted, the photo station was their last stop before heading home and I worked quickly to get them on their way. I checked his yellow card to see when his surgery date was, and was relieved when it was in less than a week from the screening day. Emmanoel was down on D ward, I work on B but I stopped in to see how he was doing after surgery- what a blessing to see the transformation in this little one. I'm so thankful that God orchestrated little Emmanoel getting the help he needed at the right time!

 

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