Working Alongside Senegal’s Only Pediatric Psycho-Oncology Team: Part 3
*Trigger Warning*
More than previous posts that I have written, this series of three posts will talk more intimately about grave and terminal pediatric illnesses and the death of children. I will discuss the factual and practical side of being involved in this work, but also the emotional realities associated with providing support to this population. I can’t imagine a situation where a discussion of this nature would not be upsetting to some degree. Please take a moment to assess for yourself if reading on is appropriate for your current emotional state. However, if you do decide to close this tab today, I urge you to try to find a time to return back to this blog when you are able. Pediatric mortality is rarely acknowledged and these truths are seldom discussed. This information and these stories, plus much, much more than I cannot possibly attempt to encapsulate in my short blog, deserve to be heard and recognized.
Have you ever seen a baby, no more than ten months old, being resuscitated?
Numbing, constant hum of a machine reminding the five doctors huddled around the boy
that their efforts aren’t working
A green mas suctioned around a mouth that has yet to speak a first word
Slightly too big and sliding up and down with every compression of the attached bag forcing
air into the tiny lungs
Have you ever seen such a tiny baby with such a cozy, ornately decorated cloth that once
held him tight to the back of his mother?
That now lies underneath him, serving as the only barrier between his bare skin and the
doctor’s wooden conference table, with notes and files all pushed out of the way
And his mom’s back now hugged by a cold concrete wall painted white, where she sunk to
the floor in the middle of the pediatrics unit hall
The back of her head rolling left to right, with her eyes trained to the sky
She did not cry, but her hand clutched her chest
She was alone, despite being surrounded by others, none sat beside her, but watched and
understood
Have you ever seen hope fade to grief in fifteen seconds?
Medical Campaign
A few weeks ago, I was given the opportunity to join a group of medical specialists and their students from Dakar to participate in a medical campaign in Nimzat, a community in Saint Louis. This was a two-day event where tents were set up and people from 37 different surrounding communities (including from the neighboring country of Mauritania) came to get free consultations and prescriptions. This campaign has been going on for 17 years and has only taken a break during the pandemic when it was not feasible to occur.
The man who began this mission unfortunately suddenly passed away during the pandemic, but his legacy lives on through the project that he started. During the opening meeting, before beginning consultations on the first full day, we were told the story of how this tradition began. At its inception, the founder desired to help his community. First, he thought that he could pray for them and their good fortune. But no matter how strong his faith or how consistent his prayers were, he knew he could not guarantee the positive impact he hoped for. Thus, he decided he would bring in medical professionals to offer health and healing—a concrete and substantive way that he could make a difference.
We were reminded at the start of this weekend that we would interact with all kinds of people. And unlike in the medical spaces that the teams were used to during the rest of the year, here, during this campaign, there was no hierarchy, no doctors or professors. There were just people, sitting across from each other, connecting. There was a reminder that the professionals were in the room that morning due to hard work on their behalf, but mostly due to the skill, knowledge, and privilege that God had awarded them to be able to study to get there. Now it was their time to use it for good and to give generously with the gifts they had been given. And through that generosity, they, in turn, would be rewarded again by God, for their goodwill, benevolent work, and desire to help others.
In the final meeting, wrapping up the weekend of work, someone said something along the lines of: You should feel proud for being here and your efforts. Even if you didn’t make the correct diagnosis or provide the right treatment, you helped and served. You listened and cared. The rest is in God’s hands.
I never realized how much faith comes into medicine until my time here. Despite spending a lot of time in hospitals and in medical spaces, both as a patient and caregiver, I never fully comprehended the level of “it is all up to chance” that is present. I could sense it and at times articulate it to a lesser degree, but it was never that explicit.
But being here, that level of uncertainty that is present in all of healthcare was spoken. It was said clearly and left openly on the table that the medical teams would do all that they could and what was in their power, but in the end, the outcomes, in every case, were unknown. They could do their best, but in the end, it was not up to them.
What this has brought up for me
I began a project when I was in New Zealand to make a small crochet square with a heart in the middle and an initial in the corner for each child I met during my year who died. It has been 220 days since I left the US, and I have made 16 squares. That averages out to be more than one square every 2 weeks. And these are just the children and families that I have met. Around the world, according to UNICEF data, in just the year 2021, 9.4 million children and infants died. With those same numbers, in the time since I left the US, that would be more than 5.6 million pediatric deaths globally.
Looking at my 16 squares can be breathtaking. The love and pain from the story of each child and family interlock with every stitch to make a delicate pattern. To think that these are only a small fraction of the tiny hearts that could have honored a little lifetime is, frankly, overwhelming.
Recently, I heard someone say that the ocean has no beginning and no end. It was a proclamation on life and death. I don’t personally align with any particular religious beliefs or groups. But this statement resonated with me. Looking at these personal memorials, I have to hope that there is something more.
It is hard to reconcile the tension that exists for me when thinking about the power of God’s will as it has been presented. There is enough that allows us to reap benefits from helping, but the hope, faith, and prayers are not enough to save the people trying to be helped? How is there enough will to bring good fortune to me and others volunteering for a weekend, but it is not sufficient to save the only living child, a toddler with metastasized cancer, of a recently widowed woman? Or to prevent an elementary school kid who dreams only of being a soccer star from needing a leg amputation? Or, at the very least, to ease the nausea of a child who vomits for hours on end during chemo sessions that are not even sure to save her life?
There is so much ambiguity in God’s will that I cannot make sense of. Frankly, I don’t think I really believe in such a concept at all. And still, I do find comfort in having faith. I think I would crumble without it. But I also cannot just leave it up to hope. I do not have a strong enough belief and I have seen so much pain and suffering that could have been prevented or at least subdued. So I have to do more. I have to advocate, speak out, and step up. I need to do what I can, even if it is just a drop in the ocean, so that I can feel I made a tiny, concrete contribution.
Ultimately, I do have to believe that there is more to all of this than what I can see and what I can understand. I don’t know where I stand on many philosophical and spiritual questions that revolve around life and death. But I do find myself hoping that these kids get a chance to live on, in some way or another, that is beyond and greater than the time they had. And since I can’t guarantee that, I will continue to create small blue and green crochet squares with imperfect hearts stitched in the middle.
Read Part 1 of this series: What is the Point of Souvenirs?
Read Part 2 of this series: Preparing a Place in Paradise
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