Trip Start Oct 01, 2008
27Trip End Dec 01, 2008
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I know I have written just a little bit about her before, but certainly not enough to do her justice. At first I hesitated to write anything more in depth about Joyce, and the Sally Test Center, because I didn't know where to begin. As time passed this concern was complicated further by the growing attachment I felt to the kids at the Center, but most especially to Joyce. I wasn't sure if I could write about her at all, and if I did, I was certain that nothing I could write would adequately explain her situation. Or, to be truthful, perhaps I felt that anything I would write would be just too painful. Spending time with Joyce has broken me open in a way that I don't usually allow, and I hesitate to further open those wounds by exposing them to other people. But the game has changed, so to speak, and this isn't just about me - not by a long shot. Let me begin at the beginning, or as near to the beginning as Don and I enter the picture:
Joyce was brought into the hospital in June by her mother, complaining of malnutrition, diarrhea, and a respiratory infection. She has a severe cleft lip and palate, and was about 11 months old when she was brought in. She had three other siblings, and her mother was a casual laborer who used to take Joyce to work with her. Her father was never seen again after the post-election clashes in January, and is pretty much assumed dead. I am not sure how long her mother stayed with her before she left, but she did leave. Joyce was abandoned in the hospital, and has been living there ever since. So she is around 16 months old right now, and only weighs 4.5 kg on a good day. She cannot walk, crawl, scoot, or roll over, although she can sit up without leaning all by herself now!
Joyce was the first baby I held on the first day I went into the Sally Test Center. She had just finished feeding, and one of the other ladies gave her to me to rock to sleep while they fed the other babies. I held her for about three hours until the center closed, long after my arms fell asleep, because I didn't want to wake her. I started going in and spending more time at the Center, sometimes with other kids, but usually holding and playing with Joyce. Her feeding schedule began as totally erratic. They had a special nipple to use on her bottle because of her cleft palate, but no one was using it. They would feed her an enhanced formula, but only once or twice a day. At other meal times they would feed her bread soaked in chai (black tea with sugar and milk), or porridge - carbohydrates and caffeine, the last thing a baby who can't put on weight needs!
To give a little background, the Sally Test Center is open 7 days a week, but only from 9am until 4pm. Outside of those hours, children who have been orphaned or abandoned live in the wards, in cribs or open beds, and are fed and changed at the mercy of the extremely busy ward nurses (who sometimes have 40 plus patients) or the other mothers staying at the hospital with their sick children. So, in short, if Joyce only gets fed four times during her time at the Center (maximum!), then that is usually it for the day. When you break it down this way, its easy to see why she wasn't gaining weight - she didn't have the chance!
With the help of Dr. Hao Tran (aka Carlo's mother), Naomi and Jen (the two new and amazing residents from IU), Don, and Sarah Ellen we finally worked out a feeding regimen for Joyce that should have her gaining weight. While we were working out this regimen, a visiting cardiologist took a listen to her heart, which was worrying Don and some others because of the way she would sweat when eating. He said he didn't hear anything alarming, but felt we should get an echocardiogram just to be sure. This was further debated for a few days, before Naomi finally just ordered one last Wednesday. Wednesday afternoon I took Joyce into the echo room, and the technician saw soon enough that she has a large VSD - ventricular septal defect. Naomi, Jen, Matt and Don all crowded around the screen, making nods and murmurs of understanding as I waited on the bed with Joyce. I tapped Don's arm, and before I could even ask he explained the situation.
A VSD is essentially a hole between the two lower ventricles in the heart. In Joyce's case, there was shunting of the blood from the left ventricle to the right ventricle, but the blood pressure in the right ventricle had not yet increased. This means that the oxygenated blood from the left ventricle is being pushed into the right ventricle, which then sends this blood back to the lungs for more oxygenation. In a few years, if not repaired, this will increase the blood pressure in the right side of her heart, and the blood flow will reverse. The blood from the right ventricle will flow into the left ventricle, and then un-oxygenated blood that hasn't had a chance to go through the lungs on the right side will be pushed into the left side and out into the body - so un-oxygenated blood will be pushed through her body. With her other health issues, and general failure to thrive, this will probably kill her.
After we saw the echo, Don and I knew that something else had to be done. Joyce would never get her palate and lip fixed by smile train, because she was too underweight. She had to double her body mass (go from 4.5 kg to at least 9 kg) before they would do the surgery. With her VSD, and her constantly aspirating food when feeding, it was extremely unlikely that she would be able to gain that amount of weight in any significant amount of time. She would need lip, palate and heart repair at the same time, and it would have to be done at a center able to perform surgeries on small babies, so she wouldn't have to gain weight.
Right now, there are multiple different avenues that we are pursuing to get her the help that she needs, and at times it seems a most complicated task. There is one hospital in Nairobi that she might be able to have the surgery at, but this option requires funding. The money not only goes towards her surgeries, but towards paying someone to take care of her while she is in Nairobi. There are also ways that we might be able to get Joyce to the United States for surgery in a US hospital, where they routinely do surgeries on newborns, so her weight would not be a problem. There is an organization called Child Spring that brings children to the US to have major surgeries, or pays for their surgeries in their home country if that is an option. There is a pediatric cardiac surgeon at Riley in Indianapolis that has helped before in cases of this nature, but that option also requires a lot of fundraising as well! Also, Rotary Clubs across the world sometimes partner to help children with these kinds of problems. We are trying to leave to stone overturned in our search for ways to help her, but it's hard to know where to begin sometimes! The fact that Don and I are leaving in two days, and would like to get most of the paperwork with us to send out when we get to the states, further complicates all matters!
So this morning, Don and I went into the hospital as usual. I had a meeting with someone in the research department, and met Don around 10am as he was just finishing up bathing Joyce. About two minutes into giving Joyce her morning bottle, she pushed the nipple out of her mouth, scrunched up her face, and gave vent to the largest, gassiest poop I have ever witnessed. I know this to be true not only because I am married to Don (just kidding) but because I was holding her on my lap at the time, and I felt it rather clearly against my leg. Don offered to change her, but my pride wouldn't allow it, so I took her over to the changing table. I gloved up, only to aware of what I was about to face, and then as I opened up her diaper, all thoughts of pride fled before the horror that lay before me. "Don!!!!!" I called across the room, "Um, yeah, you can do it. Because...yeah, I can't do it." He looked up at me from reading Joyce's four inch thick medical file.
"Seriously," he asked, "You need me to do it?" I could only nod in assent.
"Are you going to throw up or faint?" I shook my head no, but moved even further back.
To add insult to injury, as Don came over to rescue me from my own ineptitude and shame, he only deigned to use one glove, and had her expertly cleaned and changed again in mere moments - in so many ways, my hero. After she refused to eat any more, we took Joyce out into the wards so that she could be used as a patient to examine medical students that are in the middle of their current round of testing. As we walked out, Naomi walked up with her most recent chest x-ray: not good, of course. Pneumonia, Tuberculosis, or just aspirated formula? No one can say for sure, but there is something in her lungs, and that doesn't really help her case. If there is ever a case for failure to thrive, Joyce has every excuse in the book. But despite all of the odds stacked against her, I have never met a better tempered, happier, or more sheerly delightful baby.
It always breaks my heart a little bit to leave her, every time we leave the hospital. Usually I have to distract her with one of the hanging mobiles so she doesn't notice she's being left alone, but even then she doesn't cry for very long. She loves those hanging mobiles, but in a pinch anything dangling will do: an earring, a strand of hair, a nose. She'll grab at it with a vengeance. Even though she is 16 months, she is still only burbling, and making a few sounds. She is in probably the worst environment ever as far as development is concerned - there are often so many babies and kids in the center during the day, its hard to get any one on one attention, and at nights she just lies in her crib in the wards. Don and I have been working with her to try and get her to crawl, but the simple fact is she just isn't strong enough yet.
What she does have going for her, overwhelmingly so, is that there are a lot of people on her side that care a great deal about her. Not to mention the fact that she has a incredible desire to live, and, no pun intended, a great Joy in life! It is taking almost all of Don's and my combined willpower to keep me from taking her out of the hospital and trying to smuggle her back to the US with us when we leave. As it is, even with all of the support that will still be here when we leave (Naomi, Jen, Hao, Sarah Ellen, Sarah, etc) I know I will be heartbroken when we leave. I will be terrified that something will happen to her before she can get help. I will be terrified that I may never see her again, while at the same time hoping and praying that I never do because that might mean that she could get help here, and get better even sooner. Its hard, at this point, to separate my desire to see her again with my desire to make sure that whatever happens, its in her best interest.
We aren't even leaving for two more days, and I miss her already.