To Live and Die

It was quiet in the OB ward yesterday. We only had two patients and they had both been in the ward for over a week.  At 2:45 pm a woman walked in with her husband. I’ll be honest and say that my first reaction was “Darnit! I’ve been sitting here doing nothing for seven hours and NOW you want to come in….when I’m supposed to go home in 15 minutes!?!?!” I know right? Bad Emily! 

I asked what was going on and the husband told me that her belly had started hurting yesterday morning. She was five months pregnant.  They must have met the lab man on their way in because they came in with completed labs.  I glanced down and immediately saw that her hemoglobin was low enough to probably need blood, and also, she was HIV positive. They  had gone ahead and checked her husband….he was negative.  I know that Africa is known for its high rates of HIV, but it’s still pretty low in Sierra Leone. Last time I checked it was about 3%, as opposed to 25% in some African countries. I don't think she knew. 

I sent her back to the labor room to be checked while I quickly got some basic information from her husband. When I went into the labor room, it was pretty apparent that this wasn’t just ligament pain, heartburn or some other benign pain in pregnancy. She was contracting. Hard. I checked her vital signs which were fine. She measured at about 21 weeks, but was probably a little farther, as the measurement isn’t as accurate after labor begins. Next, fetal heart tones. I searched and searched. She told me she’d felt the baby move that day, so I kept looking. Finally I found them. 150 beats per minute. Perfect.  I was just about to perform the vaginal exam to see how far dilated she was when she told us (I had a midwife student with me….who ironically enough I’m sure has WAY more OB experience than me! Have I mentioned that OB IS NOT MY THING!??!!)  Anyway, I always get a little nervous when someone says they have to have a bowel movement because the sensation to push the baby out is so similar. We got the bedpan for her and she urinated. We started helping her back to bed when she said she wasn’t finished yet. As she sat back down, it happened. She delivered her baby boy into the bedpan. We maneuvered to get her back into the bed to deliver the placenta.

As I cut the cord and wrapped the baby in a blanket, I asked if she wanted to see him. She did. I asked if she wanted to hold him, but she declined. So I held him close as he took his first and final little breaths. As I was holding him, I took a few minutes to inspect him.  He was perfect. Perfect little hands, little toes, little nose. He was beautiful. He was just too small.

I went to tell the husband that she’d given birth but the baby hadn’t made it. He was visibly upset. This was her fourth pregnancy but her husband said it had been a long time since her last pregnancy. I suspected that her previous children were with someone else and this was the first one for the two of them.

After the delivery I debated about where to put her. Our ward is divided into two sections with one section for deliveries and the other section for women with other pregnancy related problems. We usually try to put the women that lost their babies in the non-delivery section so they don’t have to be surrounded by happy women with their babies.  But the other section was empty and the last time I’d tried to put a patient over there by herself for that reason, she’d asked why she'd had to be over by herself and asked if she could come join everyone else.  Knowing this woman's HIV status made me ESPECIALLY sensitive to her feeling like an outcast. So I made up her bed with the other two patients.  Her husband requested to go home, but she needed blood and even more importantly, she needed to talk to our HIV counselor.  So I asked them to wait. 

This morning I came down to the ward and saw that one of our staff members had delivered a bouncing baby boy overnight. This was a big deal!  She had a five year old little boy that died about 10 years ago. Since that time she hadn't been able to get pregnant.  Infertility is extremely painful in any culture. Here, if a woman is unable to give birth her husband will often leave her to go find someone who will "give birth for him" and she is often labeled a "witch."  My friend and her husband have desperately been hoping and praying for another baby. And it finally happened!  We are all thrilled!!

The visitors have been streaming in all morning. Literally. A constant stream all morning. They're laughing, eating, singing and dancing.  I want to jump in and dance with them! (But I will never do that. My sisters wedding video is humiliating evidence that I should never. ever. dance. Ever.)  As happy as I am for my friend, every time a new batch of visitors walk in, my eyes glance over to this other patient who delivered her premature baby yesterday.  Her baby died yesterday and tomorrow she will meet with our HIV counselor and find out news that will change her life forever. Sometimes it just amazes me the way that joy and pain can be tied so closely together!  

Musa Update IV

Yesterday marked one week being back in our village with Musa.  The journey to get here was not without its drama. The morning I was to take Musa from the hospital, I was talking with a nurse who informed me that Musa is a sickle cell patient.  (This is a disease that isn’t uncommon here but we hadn’t tested for it at my hospital.) I panicked. As sad as I was to take Musa home to most likely die, I’d come to terms with it and was ready to move ahead with a plan. This new information threw everything off.  Would the treatment change? Was there more we could do now? If so, how was I going to pay for it? While I was thrilled at the thought that we might be able to turn things around, my plans were all of the sudden thrown off and once again I felt like I had no idea what to do.

I waited around to speak with his doctor.  He confirmed that yes, he did have sickle cell disease. (This is a  genetic disease in where many of your red blood cells are in the shape of a half-moon instead of circles. This makes the blood unable to flow fluidly and often gets “stopped up” at the corners.)  However, he was still in need of dialysis. This new information helps us understand why he might have gone into renal failure in the first place. (I went home and was researching sickle cell on the internet and read that the most common cause for death among these patients is organ failure, particularly kidney failure). However, because his kidneys were already so damaged and were failing, our treatment course couldn’t change.  He still needed dialysis which meant that we were still taking him home.

The night before we were to take him home, I tested positive for malaria. I was a little relieved!! I’d been having symptoms for a couple of days but when I initially tested, it was negative.  When the symptoms returned, I thought that my alleged hypochondria was in overdrive and my coping mechanisms were just shot.  So when my weakness, nausea, fever and chills were explained with one little line on a malaria test, I felt glad that I hadn’t completely lost my mind. But now I was in a quandary. I hadn’t had this particular strain of malaria yet. And this was the bad one. The one that kills the white people. My co-workers that had had this one had been hospitalized, delirious and in need of IV fluids.  Apparently the symptoms are worst in the 12-24 hours after starting treatment. If I started treatment that night, I would be feeling bad right about the time I was beginning a day long drive up country with a carload of people and one sick kid.  I contemplated delaying my treatment and just risking it for a little while until I got home, but…..the nurse in me wouldn’t let me do that. This particular strain makes me afraid. I would say that anyone who was contemplating that was an idiot.  So I couldn’t do it. After a lot of deliberation, we decided that Musa could go and stay with his uncle for one night and then hopefully the next day I would feel well enough to travel.

God is so good. The morning after my mom announced to the world via Facebook that I was sick I got on in the morning and started crying at all of the people praying for and encouraging me. And praise God I didn’t get that sick! In fact it was my “best” case of malaria so far!!  So thank you thank you thank you!

The morning we were to travel I left the house at 8am.  We reached our village at 8pm. It was a grueling day. Between the traffic, bad road, potty stops for Musa and Marie and rest stops when Musa just couldn’t take the bumps anymore, it took us FOREVER to get home. But we did.  Musa looked awful. It took a lot out of him and he was exhausted.

I didn’t know what to expect when we got home. I’ve never done this whole “waiting to die” thing with a patient at home, so I really had no idea how long it would take.  My friend Peter and I have gone to see him every day since we arrived. For the first three or four days, he looked really rough. At one point he was so discouraged he said he’d rather die that continue to be sick like this. That was heartbreaking.  But then about three days ago, he seemed to turn a corner! He called me one evening crying in pain so I bought a medication to inject for the pain and went to give it to him. The next day when I went to see him, I was amazed at the difference! His breathing was better, he wasn’t in the pain anymore, and he said he felt stronger. He has gradually improved a little each day. 

Before Musa was sick Peter and I were doing a Bible Study at my house with him and a couple other people every Thursday evening. Last night we took the Bible Study to his house. I strayed from our previous topics and talked about suffering. I’d been thinking about it a lot lately. As I was preparing for the study I was overwhelmed by the hope that I truly do have because of Jesus. I know that my suffering is so small compared Musa’s and millions of other people all over the world. But I’m so thankful that to whatever degree I suffer, I have hope now, and I have hope for my future.

Thank you all so much for the encouragement that you’ve been to me during this time. You have NO idea how much it’s meant!!  I don’t know what the future holds for Musa…..but I’m praying that we will both learn to cling to the Hope that we have. 

Marie and I hanging out with Musa at his house

Musa Update III

It’s very odd being on the other side of the ICU doors.  It’s especially odd being on the other side of a Sierra Leonean ICU.  The ICU here is set up quite differently from ours in America. Instead of rooms, it’s one giant room divided by curtains.  It’s not as visitor friendly, as they do not allow chairs next to the beds. I’ve taken it as a personal challenge and tried all different means to challenge my stamina. Leaning, crouching, squatting, etc.  I tried to just sit down on the ground but that caused a general uproar so I had to stand up again. 

I didn’t know this before, but when you have a patient in the ICU, your life revolves around the little numbers posted on the “visiting hours” sign.  You wait all day in the waiting room for the intermittent hours you’re permitted to go inside. (Keep in mind, this is here. I don’t remember us being as strict in the US).  Because you’re spending so much time in the waiting room, you develop a strange close relationship with perfect strangers whose only commonality is that you all have a loved one sick enough to be on the other side of those doors.  A tentative first hello quickly develops into shared stories, encouragement, laughter and tears.  Musa was initially admitted with five other ICU patients. In the days since his admission, several of them have transferred into the wards.  But their family members still come to visit us. It’s very strange. But really nice. 

After Musa’s first few days in the ICU, his condition really seemed to stabilize.  Two nights after we arrived, I went home and promptly had a breakdown with some friends. He just can’t keep on like this! He can’t keep breathing like this!!  When I’d left the hospital he’d been talking, but not really making sense.  I expected his death in the next day or two, and was just praying that I would be there when it happened.  I had considered sleeping in my car that night but had an important e-mail that had to be sent out so I headed back through the three hours of traffic to get home.

The next morning when I arrived at the hospital, I was expecting the worst but was pleasantly surprised to see that Musa was doing better! His breathing looked better! He was definitely still struggling, but it was a pretty remarkable turnaround from the previous evening.  Shortly after I arrived they whisked him away to do his ultrasound.

Musa’s kidneys are failing. We suspected that this is what was happening when we were at my hospital, but didn’t have the lab results to confirm it.  They did labs here the first night we arrived and confirmed what we’d suspected.  His kidneys were failing. But why????  I waited around until the afternoon to speak with the doctor about the ultrasound results. I suspected that the cyst had returned and was somehow impeding his kidney function.  I was wrong. In fact, it was a large kidney stone that the radiologist suspected was contributing to his kidney failure. 

As the doctor passed by in the afternoon, I stopped him to discuss the results.  I needed to know what our options were. Musa has failing kidneys and a large kidney stone.  So what do we do?  Unfortunately, not a lot.  In America, when someone has a large kidney stone that won’t pass on its own, there are several different non-invasive things we can do to bust up the kidney stone so it can pass.  Here, they do surgery. But no surgeon would touch Musa with his compromised respiratory status and failing kidneys.  So we just have to play the “wait and see” game.  Will Musa’s kidneys be able to recover on their own?   The doctor explained to Musa’s parents and I that he wasn’t without hope, but that Musa was indeed, very sick.

The next few days were a whirlwind of monotony.  Leave the house in the morning, go pick up Musa’s parents, sit in 2-3 hours of traffic before arriving at the hospital.  But medicine, pay for tests, spend time with Musa. Leave hospital at 6-7pm to sit in traffic for another 3 hours before returning home.  Next day? Repeat.

On Sunday morning, I sought out one of Musa’s doctors.  They had repeated Musa’s kidney function tests, and although he looked better clinically, his lab tests showed that his kidneys were worsening. He needed dialysis.  Unfortunately there is one dialysis machine in this country.  It was donated to the government hospital in Freetown, but up to this time has never been used. Dialysis, the option needed to save Musa, was really not an option.   

I didn’t know what to do.  The medicines we'd tried and the treatments up till now were not working. And I was out of money. (Please do not read this as a plea for help. I already did that and people have been MORE than generous. Thank you!!)  I had tallied the amount of money I’d spent in 4 days at this hospital, and it was more than what Marie and I live on in a month. Every morning they brought out a list of medicines that we needed to buy as well as the bill for any tests they had done.  I just couldn’t keep this up. Especially since we knew he wasn’t getting better. I was honest with the doctor. I told her that I was out of money and that I couldn’t afford to keep Musa at this hospital. We discussed transferring him to the government hospital or taking him home.  She told me she wanted to talk to her boss (the doctor that I really like) the next day.

After this discussion I went out to my car to call my dad.  He’s my go-to man when I have no idea what to do.  The pressure that I felt was beyond anything I think I’ve ever felt before. I love this kid. I’ve been “taking care” of him for months. His whole family is looking to me to see what to do.  I felt like I failed him. I called my Dad and explained the situation to him. Because of his medical background, he quickly understood that I really didn’t have many options.  After we discussed things for a while, my dad said something that I will probably never forget. He said, “Maybe your role in Musa’s life now is to teach him how to die.”  I lost it. How could I do that???  “Emily, Musa is a believer.  He has hope!  We’re out of medical options.  But God is still God.  We have hope that God can do a miracle and heal Musa like He did countless times in the Bible. But if He chooses not to, Musa has hope that when he dies he will spend eternity in heaven with His Savior, where there is no sickness, no pain, and no tears.  Paul said that for him to live is Christ, and to die is gain and that we do not grieve as those who have no hope.”  He was right. I knew it.  I stayed in my car for a little while to collect myself and went out to talk with his family. 

As we were leaving the hospital that evening , I broached the subject with his family.  I explained what the lab tests showed and that Musa really needed surgery to remove the kidney stone. But he needed dialysis in order to get well enough for the surgery.  And that we couldn’t do it. And that I was out of money. I suggested that we transfer him to the government hospital because I still felt like I had to keep trying something.  But Musa’s mom wanted to take him home.  And pray.  I had no logical reason to argue.

The next morning Musa’s doctor arrived and when I asked how he was doing, he said, “Well not as good as you! I hear you want to take him home.”  I asked him to go see Musa and then come chat with me when he was done.  As I was waiting for him, I started crying. He was going to try to convince me to stay. I know medical people. It’s not easy for us to give up. I had all this pressure to make a decision regarding the life of this boy, and I was petrified I was going to make the wrong one. 

As soon as the doctor came into the room I started explaining my reasoning for wanting to take him home. Of course I started crying and of course he immediately started begging me to stop doing. (They HATE crying women here!)  I explained my understanding of the lab results and his prognosis. I explained that I was out of money.  He sat and listened to me, and then basically repeated what I’d told him.  Musa’s prognosis just wasn’t good.  There was nothing more we could really do.  Then he said something that I was so thankful for. He said that if he was the patient and this was his prognosis, his mother would want to take him home too. Then he asked what he could do to help.

Lord thank you!! I know it was silly, but that confirmation was such an encouragement when I was feeling utterly alone in this decision. I knew in my head that it wasn’t true, but I felt like I was abandoning Musa and letting money rule my decisions.  This doctor was a godsend to remind me it wasn’t so.  This was Monday morning. I had a meeting in Freetown on Wednesday morning so I really didn’t think I could go up to my village and back before that time. It’s rainy season right now, and that road is brutal.  I had initially wanted to transfer him to the government hospital for a few days until we could go up, but then another family member approached me about just transferring him to the ward for a few days. This would be a much less expensive daily rate and would allow his mom to stay with him.  When the doctor asked what he could do to help, I offered this option.  They didn’t technically have to do it. Musa was still sick enough to need the ICU so I didn’t know if he would agree. He went to speak to management and when he came back told me that they’d agreed to let Musa stay in the ICU so he would still get the attention of the ICU, but only charge me the price of staying in the ward.  Once again, thank you Lord!!

The plan is to take him home tomorrow. And apart from a miracle from Jesus, Musa will most likely die.  This is going to be hard. Lord give me strength!!