Mixed Emotions: Heartbreak

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My name is Jamie Wright. I volunteer with the Hydrocephalus Association (HA) as the leader of the Houston Community Network and I have hydrocephalus myself. In addition to my volunteer work with HA, I am an MD/PhD student at the University of Texas at Houston Health Science Center. I am currently in my fourth year, having completed three years of training to become a doctor, and I am now taking a “break” to complete my PhD in biomedical research before finishing my last year of medical school.

In December 2014, I was given the opportunity to accompany Dr. David Sandberg, Chief of Pediatric Neurosurgery, at Children’s Memorial Hermann Hospital, and his pediatric neurosurgery team to Port Au Prince, Haiti, where we performed an incredible 25 surgeries in less than five days. I knew going into this trip that it would be unlike anything I have ever experienced, but that does not even begin to describe it. In this blog series, I hope to share with you at least some small part of this incredible experience. Each blog is themed by a different emotion I experienced on my trip. I hope you enjoy them!

Hydrocephalus in HaitiMixed Emotions: Heartbreak

by Jamie Wright

For me the hardest part of the Haiti trip was not getting up at six in the morning after working twelve hours the days before. Nor was it working nonstop all day with only a five-minute break here and there for a granola bar or a drink of water. No. By far the hardest part was facing the reality that we would not be able to help all of the children who needed it.

One of the first patients we saw was a child that had pressure ulcers on her scalp because she was not able to hold or even move her head. She had already failed an endoscopic third ventriculostomy (ETV) and a shunt done by previous teams and was now not healthy enough to safely undergo surgery to place another shunt. If we were back in America where she could be closely monitored and a neurosurgeon would be on-hand days and weeks later in case there was a complication, that would be a different matter. The heartbreaking fact of the matter, though, was that we weren’t in America and we would not be able to help her this trip.

Then there was the baby girl whose mouth was so small even our most experienced pediatric anesthesiologist was afraid we would not be able to safely place a breathing tube for surgery. Once again, another problem that could be easily addressed in the United States but not with the limited resources we had available to us in Haiti. Other than this, she was a great surgery candidate. They decided to go ahead with it. Hers was the first surgery we would perform. Everyone gathered in the OR as the anesthesiologists attempted to place the breathing tube. We all held our breath knowing that if they weren’t able to place it we would not be able to help this baby girl. Then, the silence broke. She had done it. The breathing tube was placed successfully. Everyone breathed a sigh of relief, commended the anesthiologists on their skill, and we all got to work. What a way to start our first surgery day!

We came in one morning to the news that one of the children we were supposed to operate on that day had developed a fever the night before. In the U.S. we might have just rescheduled his surgery to the following week, but there wouldn’t be a neurosurgeon in Haiti the following week. We delayed his surgery and hoped that the fever would break in time for us to go ahead with his surgery this trip. Thankfully, his fever broke in time.

Then there were the children for whom we were not able to complete an ETV due to the structure of their brain or lack of visibility due to scar tissue, so we had to place a shunt instead. I know shunts aren’t the end of the world. I have had one most of my life. In Haiti though, where the only trained neurosurgeons are those that fly in from other countries every month or so, a shunt infection or malfunction could very easily prove deadly.

Finally, there was our last surgery patient the day before we had to leave. I had heard the term “skin and bones” many times before but as I looked upon this young boy, draped across the operating room table as he was prepared for surgery, I realized I had never truly known what it meant until that moment. Due to his hydrocephalus his head probably weighed as much as the rest of his body. We were told later that his mother had been coming into the clinic every one to two weeks to get formula and supplements but he just couldn’t seem to gain weight. Thankfully we were going to be able to treat his hydrocephalus but we would not be able to provide him with the supplemental nutrition he so desperately needed.

Then, just four short days after we arrived, it was time to go. We had done twenty-five surgeries in three days. We were exhausted but it was still heartbreaking to leave behind our young patients. Their only surgery follow-up would hopefully come in two months when another volunteer team was planning to come.

Other blogs in the series:

Mixed Emotions: My Experiences in Haiti

Mixed Emotions: Nerves

Mixed Emotions: Joy

Follow Jamie on social media!

Twitter @JamieMae87

Instagram jamiemae87

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