Working Alongside Senegal’s Only Pediatric Psycho-Oncology Team: Part 2
*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.
Wishing
For those of you who don’t know, after I graduated from Oberlin, I decided that I could not go from being a full-time college student with multiple jobs to doing nothing all day. So I decided to enroll in an online program to become a Certified End-of-Life Doula through the University of Vermont. Ultimately this coincided with my Child Life Practicum at Connecticut Children’s Hospital, but it ended up being a good balance of practical experience during the day and theoretical learning in the evenings for my course. While I’ve been very happy with the class and pleased that I did it, until recently I hadn’t seen any real benefit resulting from having that certification.
During the first several weeks of my time at the hospital here in Dakar, we had one patient who was very ill and spent most days sleeping the whole time. We weren’t able to ever talk with the child during rounds nor get them involved in any of the extra activities. Eventually, despite my expectations, the child and their family went home, as the child was doing somewhat better. It was a shift that took place over a weekend. Due to the lack of interaction and getting acclimated with the team and hospital, after this family left, I didn’t think about them much again until I saw them in one of the beds one morning a few weeks ago.
When I first saw the child, it was clear that things did not look good. Upon seeing the situation now, it was evident that they were on a fast downward trajectory. I noticed a different companion with the child from before, though. After the visit, I learned that this was the child’s older sister, and she did not know the sibling’s real cancer diagnosis, just that they were ill and needed hospitalization.
Leaving, I wondered where the mother and father were. Being in the room, I knew the child had limited remaining time. The rattled, labored breathing was the telltale sign. Being able to notice this is one of the greatest gifts given to me by that death doula program. I had time to mentally prepare for what I knew was to come.
I asked the other team member doing rounds with me about the child’s parents and remarked on the breathing. I was told that they were tending to things at home. I remarked again on the breathing, stating my thought that the child had only a matter of days if not less left - a sad comment to make transitioning from one visit to another. My colleague agreed, saying the child is very tired, a way of agreeing that they are nearing the end of their life.
That night, as I got ready for bed, I brushed an eyelash from my face. Before swiping it off my fingertip, I recalled a tradition of making a wish on a lost eyelash. So I took a moment and hoped that the child’s parents would make it to the hospital bedside before it was too late.
Wishes don’t always come true, unfortunately.
The following day, the psycho-oncology team gathered in our office for a weekly meeting to discuss happenings and updates with patients and families. Halfway through, a heart-wrenching scream and wailing commenced and I dug my fingernails into the palms of my hands instinctively knowing the cause. It is a strange experience to feel your heart sink and begin to race simultaneously. With a blink, I made another wish, that the child was no longer in pain, and I really hope that one did come true.
As the meeting ended, someone in the group mentioned the painful cries. In what I think is a no better example of the amount of suffering the team encounters and provides support for, the comment was met with a question. “Which cries?”
Grief Support Customs
Something that motivated me to embark on this project was realizing—especially during the pandemic and working with pediatric losses—that people in the US don’t know how to act around the bereaved. We generally don’t know what to do or say, who should reach out, and when. Usually, this leads to folks simply not doing anything at all, for fear of overstepping or misstepping along the way.
One of the first things that I noticed during my time with the psycho-oncology team here in Senegal was that there are a lot of customs that shape how they approach and provide support following the death of one of the patients. I’ve witnessed this both firsthand and at a distance. These customs, at least within the team, make it so that no family is forgotten or missed for support.
The typical sequence of events goes as follows: Depending on the location and time of death of the child, either a parent/family member will stop by the office shortly after the death to inform the psycho-oncology team of the loss, or one of the pediatric oncology doctors will let the staff know by phone or in person. If a family member stops by right after the death, the team member will offer some immediate support and condolences. In some instances, in my observations, I have also remarked on some themes of encouragement for strength and perspective changing to the well-being of the child now that they have passed away and focus on remaining living children in the family, if there are any.
Then three days following the death, a significant day in the Senegalese mourning period, a designated member of the psychology team will call a parent to see how they are doing and offer further condolences. This is called an accompagnement du deuil phone call. During this conversation, it is usually determined how frequently future calls for grief support will be made to the family, with some opting for every week, every 15 days, every month, etc. If this is not decided, then the team will call back around 8 days later for another conversation and informal grief-coping assessment.
Working Within Tradition
According to government data collected in 2021, about 96% of the Senegalese population identifies as Muslim. Christians, mostly from the Catholic denomination, make up most of the remaining percentage. There are many traditions surrounding loss and mourning in Senegal, which stem from traditional Muslim practices and beliefs, that then have intermixed with broader Senegalese culture.
There are several important Islamic funeral rites that must be followed after death. One of those is that the burial must take place very shortly after the death. Due to this, there are no services for visitation, wakes, or viewing after the loss occurs. Ideally, the burial occurs before the next sunset, or within 24 hours of the death.
In the three days following the loss, the family typically welcomes visitors and the community to receive condolences and food. This is a generally-observed 3-day mourning period.
In offering condolences, too, there is a tradition and practice for how this should be done. Most of the families that the service interacts with speak primarily the Wolof language. However, during my time we did have a mother whose child died who spoke French. It was proposed to me to make the 3-day condolence and check-in phone call to the family. I had to express my nervousness around this proposition and suggest that I just listen in on the conversation. Although I would have loved to be able to offer support to that family, I knew that I could not appropriately and accurately follow the culturally expected norms for relaying condolences for the loss of the family’s child and thus did not want to put myself, the team, or the family in a position where I might unintentionally offend or hurt feelings. To some of the others on the team, though, this script comes naturally and can simultaneously be delivered without flaw but also with all of the felt meaning, intention, and emotion underneath the words.
Further, there exist customs around the displays of grief, just like in all cultures and contexts. As death is a part of life, all of the dynamics that come into play with the living also interact when dealing with the dead and the accompanying mourning. There are norms, spoken and unspoken, about what level of grief displays are acceptable, who can grieve, where, when, and for how long.
One of the team’s psychologists shared a story about a mother who continued with grief support with the service several years after the death of her child, because it was the only space where she felt she could talk about the child she lost. At the same time, another mother shared that she was pregnant with a baby during the illness of her child who died. After giving birth, she decided to give the new baby the same exact name as the child who passed away a few months prior.
While discussing the illness or death of their child with the psychology team, fathers or other male figures will bite back tears or leave abruptly with bright red eyes to avoid crying in front of the women on the staff. Others will bring up conversations about having another child with their wife not long after the loss of one due to cancer. Some fathers will quit their jobs to accompany their child during their hospitalization. Meanwhile, another might get engaged to a second wife because the first became “too disconnected” due to the stress and grief of the illness and death of their child.
I give these examples, all of which have actual stories attached to them, to show that even within the customs and traditions, there is no set way a person is going to respond to the death of their child. But, there are ways in which the cultural practices and expectations will influence, motivate, or cause someone or broader communities to react based on those responses.
Role of Faith
As I have sort of mentioned before, the role of faith and the influence of God plays a big part in all of this. Much of the script for offering condolences centers around affirming that God has a plan and that this was part of a divine will and timing. For some families, these statements bring a lot of comfort to them. It is something that they relied on throughout the illness of their child too - that they must have faith in God and his plans.
In these messages, there are statements urging trust in God, a wish that God gives the bereaved patience, peace, and strength. There are also occasionally themes of rejecting sadness and instead praising God’s will and the child’s return. The most prominent message, though, is that the family must not lose their belief in God.
In relaying these sentiments, as tradition dictates, the team has shared that sometimes it is important to also include statements that acknowledge the challenging nature of the situation in which they are placed. Solely providing these customary phrases can be very reassuring and beneficial for some families. But for others, it can cause them to deny their true feelings of anger, sadness, and frustration.
It can be seen that huge displays of grief and upset are signs that a person is questioning or has lost their faith in God. So in working with the psychology team, sometimes a family member needs permission to express the negative emotions that they are feeling about the death, even after the allowed mourning period. They need to be supported and validated in their feelings of loss and anger, even if they are directed at God. And for some, the death of their child does cause them to question their faith. It makes them wonder what the purpose of that death was and if God was willing to make a child suffer and die in the manner their son or daughter did, then the adults, with actual sins, need to worry.
Yet, again, for other families, death can strengthen their relationship with God or reaffirm their faith. They can find peace in their beliefs and comfort in their creed. Some are even able to see light and positivity through the loss. They can rejoice that their child is no longer suffering and no longer tired, a way that people tend to describe an individual as they reach the end of their life. And after the child dies, the family can look on with hope and say that they feel it is a blessing, because the child is now preparing a place in paradise for them.
Read Part 1 of this series: What is the Point of Souvenirs?
Read Part 3 of this series: “In the end, it is in God’s hands”
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