Tuesday, September 2, 2008

Standing at a crossroads

I received some troubling-but-not-surprising news the other day. The hospital in Ohio that I was hoping would take on Musa's treatment has finished deliberating his case. They are not able to take him on pro bono at this time. And if their estimates for his care are accurate, we'd have to come up with at least $60,000 to pay the bills. I don't know what to do...keep going, or call it in?

If you are unfamiliar with Musa, so here's the brief back story (or, at least, as brief as I can write it): Musa is a little boy who lives in Freetown, Sierra Leone, the nephew of a friend from my church. He suffers from Hirschprung Disease, which is a chronic blockage of his intestine. He has had five surgeries in his 11 years. And now he lives with what's termed a "primitive colostomy," which means his large intestine protrudes from his body and rests in a colostomy bag, along with his waste. Last year when my sister was in Freetown working with IOM for five months, Musa's family opened their hearts and home to her, which is how I became aware of Musa's condition.

Hirschprung Disease is treatable and manageable in most Western countries -- in the US it would have been handled before his 1st birthday -- and Musa's physician in Freetown fully believes that his colostomy could be repaired with what's known as a pull-through procedure (in which the colon is essentially put back together) -- but it cannot be done in Sierra Leone, a nation ranked consistently at the bottom of the UN's human development reports (in 2005 SL was ranked 177 out of 177 countries).

When my sister told me about Musa, I approached his uncle here in Wilmington to discuss how we could bring Musa here for treatment. I talked to my minster and some people at my church, and we started a full-on blitz of local hospitals, doctors, and medical supply companies. At the time, Musa's immediate need was colostomy bags. I contacted some medical supply reps, and one lovely sales person at Hollister International immediately offered to help. She sent a shipment of bags and other supplies to Musa, and has vowed to send supplies for free for as long as he needs them. This is huge, right? And it fueled my hope that we could do even more.

So I then started on the bigger project -- finding a hospital willing to take the case... pro bono or at least at a substantial discount. To keep this as short as possible, I will only say that I went to every local hospital (Philadelphia, Southern NJ, Delaware) and was turned down (or re-directed) by every one. Meanwhile, I reached out to lawyers and immigration folks who could help us with getting Musa and his mother here. Project Musa became all-consuming. I spent much of each day from January through May trying to find a hospital, doctor, or organization to champion our case.

In early May I heard from a doctor in Ohio, a parishioner of my minister's best friend. He happens to be on the board at Nationwide Children's Hospital in Columbus, and he felt very strongly that his hospital could help. He took Musa's case before numerous docs and boards for review, got a few docs to co-sponsor and donate their time, and went to bat for us with the financial people. He was, indeed, an answer to prayer, and I really held on to hope that Nationwide would be our hospital. His minister even started mobilizing a care team of people in their church who would shepherd Musa and his mother through the months that they'd have to be in the U.S.

But, as the summer months came and went, I started to realize that Musa's chances at Nationwide were dwindling. And finally last Friday I received the e-mail that said the budget for international aid had been cut, and there were more urgent cases that bumped Musa down on the list. Nationwide is not our hospital after all.

So here I sit, nine months after I learned of Musa. At a crossroads, I suppose. I just don't know what to do. I have been praying for some sort of direction all weekend, and so far, I'm directionless. I knew this was bigger than me when I took it on, but I didn't realize until now just how much bigger than me it really is.

I e-mailed my contact at Hollister immediately Friday, to find out if they were still on board with a sponsorship, but I'm not so hopeful there. I think to everyone I've spoken to, at first helping a little boy in a remote corner of Africa sounds like a fabulous idea, but when it's time to put up some cash, maybe there are bigger, further reaching ways to spend it. Which is why I have a very hard time asking my church congregation or local organizations to help raise the money. I mean, we're talking tens of thousands of dollars here for a mission project. Usually mission projects help multiple people, families, villages, etc. And $60,000 could help a lot of villages.

But on the other hand, what's the price of one child's life? If it were my child, I would want someone somewhere would fight. And I want to be the fighter for Musa. But I also have to be practical and consider the toll that bringing him and his mother here for 6 months could take on his family. Just getting a visa alone could cost his mother her job because she'd have to travel to Ghana to interview; Ghana is two countries away, which could take days to traverse. And of course if they come here, who will look after her other two children? How will those children fare without their mother for all that time? How will the family fare without her income? Would he have care in Sierra Leone if needed after the procedure here? The family has assured us that they are willing to do whatever it takes, but I don't want to do more harm than good. These are the questions that make me feel it's time to stop pushing.

Musa is not in immediate danger. In fact, I hear he is gaining weight and is relatively healthy. Wonderful. He has medical supplies coming on a regular basis, which is far more than his family dreamed of only a year ago. Still I am haunted by the photos of his mother cleaning his exposed intestine, pushing it back into his body so she can attach the colostomy bag. My stomach lurches when I think about the anguish she and his father must feel to know that he is always just a hand-washing away from a fatal infection. My heart breaks when I hear his uncle here in Delaware beating himself up for not being able to help in a more substantial way. If this primitive colostomy is left untreated, what will Musa's quality of life be as he gets older? Will he be able to work and contribute to the family? Will he be able to have a family of his own? Or, will he be a social outcast? I don't know. These are the questions that make me feel I need to keep pushing.

But I really don't know what to do at this point.

Other than to continue to pray for direction. And to thank God every day that my own child is healthy and whole, and that he was born in a country where he could be treated for something like this.


paddy+henrysmom said...

I remember you telling me the early part of this story months ago, and I've been too wrapped up in my own little life to ask how things were going.

It's a long shot, but you might try contacting the Hospital for Sick Children in Toronto: http://www.sickkids.ca/internationalprogram/section.asp?s=The+Herbie+Fund&sID=9303

Apparently, they have a fund set up for just such things, though there must be a waiting list....

Amydiane said...

We should talk about this. Maybe I could help. I do have a little experience with fund raising. Have you tried getting some type of grant?