It hurts more when you know their names

We all know that way too many kids die in Africa. 1 in 4 (moving toward 1 in 5) children don’t live to the age of 5. We see death all the time. I couldn’t tell you how many deaths I’ve watched since I started working at the hospital. Normally, these are sad but they don’t change the day. We can’t grieve the loss of each child as terrible as that sounds because if we did, that would be all we would do. Often these kids come in and are close to death, they don’t stay long, often we couldn’t even tell you their names. But there are some cases that come and they stay at the hospital awhile, we know them, we know their families, they touch our lives. When they die, it hurts. The last month has hurt. We’ve lost 4 kids that were very special. We lost two this week. I can think of two kids dying in my childhood. Maybe there were more but I remember two kids that died of cancer. We had two die of cancer THIS WEEK. So in hopes to process all this a bit more, I want to share about the kids we’ve lost.

Mariam.

She came to us after having been sick for years. Yes, years. She was wasted away and having trouble breathing. We quickly diagnosed tuberculosis which she got from her grandfather who had had it and died three years prior. Though she had been to doctors, no one diagnosed it. So the poor girl suffered for way too long. Finally, since she had family members who worked at our hospital, she came to us. We treated the TB and relatively quickly she had negative smears but she had extensive lung damage which was taking a long time to heal. She spent three months in our hospital, most often on two oxygen machines. Eventually she started getting better and could even walk around the entire hospital with an oxygen machine with battery backup. She was down to only one oxygen machine. Then, she just started doing worse again. And worse. She couldn’t make it 20 feet without having to stop and take a breath. Still, I thought there was hope. With time, she would get better. Then we had to go to Bamako for a conference in October. We got a call while there that she died. It was hard to not be there when she passed. She had been come a part of our daily life. Even Dawson had come up for a couple Sundays and walked with her around the hospital. But we take it and try to move on. Unfortunately we move on to more death.

Founé. (sorry no picture)

We got back from Bamako and our week at Field Forum in Sikasso. One of the HIV ladies I work with came because one of her babies was sick. She had triplets. We had worked with her a lot because she couldn’t feed three babies. We gave formula to one of the babies all year. We saw them regularly. So when Barakissa (mom) came with her sick child, I looked for all three little girls. I saw Awa, she has the most hair, but is smaller. I saw Wasa on her mom’s back, she’s got a wider face and the one we who drank formula. I asked where Founé was. Barakissa simply said with a smile, “A bana.” She’s dead. Just like that, plain and simple. She’s dead. What?? Did I hear her correctly? We went and talked with a nurse to make sure we understood and to find out what happened. Apparently, she got sick with fever (maybe malaria). She was admitted to the government hospital. She was treated then came to our hospital…while we were in Bamako. The nurse talked to her and I guess, from my understanding, told her that if she was sick that she should go back to the government hospital since she didn’t have money and the care is free there (while Doctors without Borders is here). Now I don’t know why exactly she was sent away and I’m not saying at all that we are the saviors and had she stayed at our hospital she would have lived, but I do think it was an opportunity missed. I for sure would have paid the bill had I known she was sick. It kills me that we weren’t here and that she went back to the government hospital. Even if she had to die, I wish it had been at our hospital. I found myself that week being snippy to the boys, upset at this and that, silly things that happened. Finally I realized it wasn’t those things at all but rather my sadness over the loss of Founé. I know I shouldn’t but when you give formula to a family, you kind of start to take stock in the kid (and in this case all three). Just like with our friend, Sali. When we gave her twins formula and you kind of feel like they are family and you want to see them grow up. Then Sali’s son died right after returning to the village. So I should know that giving formula doesn’t save lives, nor do we have any more control over their well being. It’s sad when they die. It’s sad when you invest so much and then they so quickly die.

Rokia.

Rokia came to our hospital at the beginning of the year. She had a huge mass that was protruding out of her stomach. It took us awhile to figure out it was cancer. We started treatment and the cancer went away. During her stay, her father accepted the Lord. Since then he has returned to his village of birth and told others about Christ. He even came and asked for Bibles so that he could give them away since no one in the village had a Bible. Unfortunately, Rokia’s cancer returned. When she came back a little over a month ago, her belly was huge. I don’t know how she could stand it. We tried chemo again and it didn’t shrink. Dan, our OB, took out the tumors last week just to give her some relief, as it was greatly needed.

She was doing fine until Monday she started running a fever. Brett told the nurses to give Ceftriaxone. It was forgotten all day and then that evening she died. Now, we aren’t sure if it was infection or just some other cause. Regardless, it was sad. Brett took the family home that night and sat with them for awhile. So sad. Her case is a little easier to deal with because she had failed chemo. We knew she was going to die at some point, it was just sad to see her go. Thankful also that her parents heard the good news and chose to follow the Lord. Still, it is hard to know she is gone.

Aboubacar.

The next morning after Rokia’s death, I went to see Aboubacar and his mom, Awa. She was scared to death after having watched Rokia die. We assured her that Rokia’s cancer and Aboubacar’s were not the same. After all, Aboubacar had responded beautifully to his treatment for the T cell lymphoma in his chest. I had spent several mornings with Aboubacar and his mom. We talked about how hard it was to watch your child be sick. She commented on how she wished it was her instead of him. She wanted to suffer in his place. Though this would be a common thought in America, I’ve never heard this before from a Malian (well, she’s Burkinabe but close enough). Her love for her son was beautiful to see. I would come into the room in the mornings and find them sleeping together, his little body wrapped in hers. Or other times they would lay face to face with his head resting on her arm. If she turned away, he would grab her face and pull it to his. It reminded me so much of Kenan as he does the same thing at night when I lay with him. He loved his mommy and she loved him. I think that’s what drew me to her. I could see her pain and understand her thoughts as a mother. I told her how I myself would start to fear for my own children, just being around Aboubacar and seeing him suffer. Afraid my kids would have cancer. And that’s just a silly fear. Her fear was real. She was afraid for her son. She wanted to relieve his pain. There were some days more than others that she was really burdened and fatigued by these thoughts. I could see it in her eyes and the way she would look at him before she walked out of the room. Those days I would just go and sit with her. Sometimes I would pray and sometimes I would just sit, not understanding her pain but understanding another heart of a mom. As the days went on, Brett gave me jobs with Aboubacar. The last few days he was “my patient” and though I couldn’t do all the things he needed, I was supposed to be keeping a good eye on him and making sure his needs were taken care of. Monday and Tuesday were bad days for him. He was dehydrated and didn’t have much life. He turned a corner on Wednesday and Thursday. I was so happy as he fought me as I put the oxygen monitor on his foot. He didn’t want it so he would push it off with his other foot. I finally had to wrap his feet in bandages so that he couldn’t get the monitor off. This thrilled me. It meant he was doing better. He had some fight in him. It was Wednesday when he was sitting up, leaning on his dad and his dad asked if he could leave and go to work. Aboubacar said no. He grabbed his dad’s hand and held it tight. He wanted him to stay. And he did. He ended up needing oxygen on Thursday and by Friday morning his oxygen saturation was in the 80s (should be 95-100). He didn’t look as good. He looked weaker. We made all sorts of changes to his medications and fluid intake. Around 11 am, we decided we needed to fix his IV since it wasn’t working and that’s how he received a lot of his meds. As a nurse came and did it, I watched Aboubacar let him have his hand. Only once did he slightly pull back. The rest of the time he let him do it. He was losing life. I walked out and went to the office, anxious to get my mind off of him. Brett walked in and I told him, “Aboubacar is going to die.” He kind of got mad at me, mostly because I was saying this without any solution to the problem and without any physical findings to support it. But it ends up I was right, I just had no idea the end was so soon. At 4pm, Brett got the call that they were bagging him. We rushed out the door. He was dead by the time we got there. They were just stopping everything. I sat down and immediately started crying. And crying hard. This would be normal in the States, but not here. You aren’t supposed to show emotion, after all, it’s Allah’s will. But I couldn’t help it. As I watched Awa look at her son and bawl, I couldn’t help but hold back my tears. It hurt deep down. It still hurts. Soon after a mother of another patient came in and started her speech of it’s Allah’s will, you shouldn’t cry, it’s ok that he is gone, etc etc. Some random person always comes in to say the same kind of thing when a mom is crying over her child. I wanted to punch the lady in the face. Awa should cry! He shouldn’t have died! He was only three! Just like my Kenan. He was too young too die! A few minutes later our own nurses said we needed to take the body because otherwise Awa would keep crying. Again, I thought this was crazy but we gave into their culture, since after all, we are in their culture.. Soon after this, we took the family home. Awa and her mother-in-law went into the house and started to cry. Brett commented that he thought it was interesting that they had stopped crying but both started as soon as they got home. To me, it made perfect sense. They were home, where Aboubacar was supposed to be. Where he played, where they did everything together. Now they were there without him. Aichata, Aboubacar’s dad, asked Brett to go get the body with him (so he could be in a vehicle). I stayed in the courtyard for him. No one really talked except greetings. I was amazed at the ease in which preparations were being made. All the women had jobs, they were getting this and that. Now I’ve experienced enough family deaths to know there is this weird since of calmness that does occur when you must get things done. This was different though. It was just too easy. To me, time was standing still. This was huge. Aboubacar was dead. And though a few tears aside from the parents were shed, it wasn’t a lot. Everyone did what they needed to do for a funeral of a child. They do this all the time. Kids die all the time. Malians are always burying their children. It shouldn’t be this easy. Brett finally came back with Aichata and the body. We decided it was time for us to go as they would soon bury him. We said our goodbyes, I told Awa I wanted to see her again, we hugged and cried a little more (even though it wasn’t culturally appropriate), and then Brett and I left. We came home and all I wanted to do was hug my children. Thankful for their lives. We got an email from the oncologists who has been helping Brett with all the cancer patients. His name is Alan Anderson, a friend of Brett’s from residency. What a gift to have a pediatric oncologist to get protocols from and to ask questions. He has been a tremendous blessing in all of the work with the cancer kids. Well, he wrote and mentioned that maybe Aboubacar had PCP, a type of pneumonia that only immunocompromised people get. Brett started reading about it and realized that 80% of people in Africa have it in their lungs. You only see it when their immune system is so depressed, like in AIDS usually, or in cancer patients. He had been on prevention meds off and on. Three weeks ago he came in with a cough. We thought it was just a cold. We thought his weight loss was the chemo. We thought the lower oxygen saturations were from the left over tumor or some infection he had caught in the hospital. His lungs were clear- up until a few hours before he died. But now we know. It was PCP, an easily treatable illness. He just needed Bactrim- one medication- and he would have been healed. It wasn’t the cancer or the chemo that was killing him. If only we had known. If only we had caught it a little sooner. So , so sad to realize. Poor Brett carries this weight much more than I do as he feels responsible for all that goes on. But he isn’t an oncologist. He can’t know everything a three year trained person knows just from getting protocols from a friend. That doesn’t really help though when the precious life is lost.

So here we are now trying to muddle our way through the last few weeks and the heartache we have felt. Brett has come back from our furlough trying to live out 1 Thes 5:16-18, we even have it as wall art in the office. Be joyful always, pray continually, give thanks in all circumstances. So what do we give thanks for in this? Thankful that Mariam knew the Lord and is now with her Savior. Thankful that her father who had an extensive foot wound and was never able to see her while she was in the hospital is now here in Koutiala and had a skin graft and hopefully will be able to work again soon. Thankful that Rokia’s parents heard of the love of Christ and chose to follow Him. Thankful that Founé’s sisters are still living. Thankful that now we’ll know to look for PCP and hopefully no one else will die because of it. Thankful to have met Aboubacar’s mom and hopefully will get to have a lasting relationship with her. Thankful for each child that we have the opportunity to meet and interact with. Thankful to have known them and for the mark they left on each of our hearts.

A Pediatric ICU doctor came out for a visit while Mariam was here. On hearing of her death, he wrote these words…

Patients like that, who are around a long time and you get to know really well, hurt you badly when things go south. Even battle-hardened PICU staff have a hard time with it. Mariam should have died a long time ago, but thanks to your efforts, she was able to be around people who loved the Lord, loved her, and showed her she mattered. Whether it's for a day or 90 years, that's really all any of us can hope for.

I think that’s fitting for all of them. Though they died at our hospital, at least they were loved and cared for in their last days. It is a privilege to be able to do that, even though it hurts.

I’ve been singing this song by Third Day a lot the last few days and it just seems fitting to end with it.

Jesus, Light of the World
Shine through the darkness
Bright as the day
Jesus, Light of the World
Shine in our hearts
Show us the way tonight

Who is this child in a manger?
Kings bow down and angels sing
The Lord of the Universe
Has come here to save us
A precious Offering
All the heavens above and the earth below
Are filled with the light of Your love

Jesus, Light of the World
Shine through the darkness
Bright as the day
Jesus, Light of the World
Shine in our hearts
Show us the way tonight