Sunday, June 10, 2012

Don't get a big head.

At least, not like this girl. She's two years old and seems to be well fed. And her head is bigger than mine. Literally.

Her dad brought her to me, desperate. He visited all the hospitals in N'Djamena. Nobody there could help him. There is no neurosurgeon in Tchad. So he came here.

And I can't help him either. I told him that his daughter has hydrocephalus. I told him that the liquid in her head keeps getting made, but can't get out. I told him that it's smushed his daughter's brain into a thin rim near the skull bones and now almost all of her head is consumed with liquid. It even pushed so hard to make the head and skull bones get to the size they're at.

He understood.

I told him that in America, there's a surgery that they would have performed months before to put one end of a tube into these large collections of fluid, that they would have buried the tube under the skin and put the other end in her belly, where the draining fluid could be reabsorbed.

He asked me to do the surgery.

I told him I couldn't. I don't have the proper drain/shunt. I've never done one before. I've never seen one done. I just know how it's done. I told him that if I tried it, I would probably end up killing his child during the surgery and that, even if she did survive, her brain was probably not elastic enough to recover and she would have a great risk of infection or her shunt blocking.

He told me that she couldn't walk, talk, see, feed herself. Nothing. That she wasn't living anyway. He told me that it's ok if she dies in surgery, maybe it will help me learn and do a better job with the next patient.

It was painfully clear that he cared for his daughter, had taken good care of her, and that his heart was not just breaking, but broken. He knew his daughter would die.

That night, just because, I tried to look up in all our books how the surgery is done. None of my books will even discuss it. They don't want to condone trying if you don't already know.

Today he was back: My daughter will die anyway, that's a 100% certainty. There is a great chance she dies during the surgery, I understand. There is a great chance that she dies after the surgery, I understand. There is a great chance that she never gets better, I understand. There is a great chance she will have an infection after the surgery, I understand. But I understand that there is an chance, perhaps an infinitely small chance, perhaps less than a 1% chance that she will do better. And there is a chance that you can learn and do better with the next patient. That is enough for me. I want you to do the surgery.

What do I do? What would you do? I'm not in the Kevorkian business. I don't kill people. But I know that, even if his daughter dies, this father will be able to rest knowing that he did all he could for her. He spends all day and night feeding her and tending to her, since she can't feed herself or toilet properly or express her needs and wants.

What do I do? If I send her away, she will die a miserable death at home, having had her last option exhausted.

What do I do? If I operate, she will almost certainly die before she leaves the operating room, if not, shortly thereafter.

What do I do? If I try to send her overseas, the organizations who do these surgeries will refuse. I've met this problem before. They only accept patients when they're certain they'll have a good outcome. If they accept a difficult patient, and the patient dies, it doesn't look good for their donors and publicity.

What do I do? I can't pay to send her overseas myself. Rumor has it there's a neurosurgeon there who can do the surgery for $2,000, plus cost of transport, expenses, etc.

What do I do? Any neurosurgeon want to send me the textbook chapter on shunts for dummies? When you don't have a proper shunt?

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  1. I can't imagine the decision you have to make. But I understand the father's insistence. I appreciate the unselfish encouragement he gives you that "it will be good practice for you for the next patient". Wow. That is heavy. 3rd world problems making my 1st world problems seem small. I will pray for the right thing to happen in this situation. Only God knows what should be.

  2. Absolutely heartbreaking.... If the funds are raised can the neurosurgeon help her?

  3. The father knows she will die if you do nothing. That is certain. Doing the surgery will give him the peace of mind of knowing that he didn't leave any stone unturned in the pursuit of healing for his daughter. The surgery may not be for the daughter at all, but for the father.

  4. My name is Linny. A blog friend sent me the link to this post. Our youngest daughter {Ruby} has multi-oculated hydroceplahus. She has over 12 places in her brain that have water.

    The point is that my husband found our Ruby in an orphanage in Uganda. He advocated for care for her and found a missionary hospital in Mbale, Uganda. The orphanage asked if we would adopt her. We said "YES". We have adopted 8 of our 11 kids...most special needs.

    My husband and 18 year old daughter {Emma} came home {they were in Uganda leading a missions team} came home. We got our paperwork together and our 18 year old and I flew back to complete Ruby's adoption. We took our baby girl to the Mbale hospital. It is called CURE Hospital. CURE Mbale, Uganda did her first brain surgery, fenestrating through a few of the walls of the water-filled cysts in her brain.

    The problem was that our Ruby was severely, severely malnourished. She was a year old and only weighed 6 lbs. SIX!

    Emma and I got Ruby back to the United States and she has had FOUR more brain surgeries. Because of all the pressure in our brain Ruby is also blind. She has cerebral palsy. BUT she is the greatest delight to all who know her.

    I looked on CURE hospital site and there are CURE hospitals in Kenya, Malawi, Niger, Uganda, Zambia, and Ethiopia. I cannot say enough about CURE and the care they gave our Ruby! They were A.M.A.Z.I.N.G.

    The neurosurgeon here in Phoenix {where we relocated for Ruby's care} has done the four last surgeries - three of them to fenestrate the cysts and one to put a shunt in...the fenestrations allow the cysts to 'communicate' with each other. He really wanted her to have to only have one shunt if possible.

    I have no idea what country you are in or near, but that baby could be helped by CURE! If you have questions, my email is:

    That precious baby needs CURE...I am sure you are a very capable doctor, but they are in many countries in Africa. If the blog world knew about the baby's situation, they would surely raise the money in no time for that man to take his baby girl to CURE...can I help in some way? My blog is APlaceCalledSimplicity. Our Ruby is on the header. She has been home with us since November. It was a year ago almost today that my husband found her...a year old and 6 lbs, emaciated and one year later, God's grace and healing can be found and she is 24 lbs, 5 brain surgeries and a whole lot of love and she is thriving!

    Bless you for all you do. Can I help? Please?


    I don't know if you've heard of it or if its even possible...but this last link has an alternative treatment called endoscopic third ventriculostomy (ETV).