Kids' Health Blog

Dr. Stefan Friedrichsdorf, director of Pain and Palliative Care and Integrative Medicine at Children’s, is on a two-week trip overseas to train caregivers about pediatric pain management. Last week, he was in Zambia, Africa, for the  1st Annual Pediatric Palliative Care Symposium. He taught more than 150 professionals at an event sponsored by the CDC/Atlanta and the US President’s Emergency AIDS Fund. This week, he’ll be in Cyprus for “Advanced Pain Medicine & Palliative Care for Children: Workshop for Professionals in Pediatric Hematology / Oncology,” where he’ll teach the Middle East Cancer Consortium about pediatric pain management, teaching Israelis and Arabs in the same room, united by a desire to help children in pain. Read all posts about his trip.

Tuesday, Nov. 22
In Zambia (a democratic and very safe country) in southern-central Africa, there are 6.8 million children 0-17 years of age. Most international help is geared toward HIV/AIDS (120,000 infected children 0-14 years) and malaria. Pediatric cancer, however, seems forgotten. There is only one pediatric cancer ward in the country here at the University Teaching Hospital (UTH), which has about 180 new diagnosis/year, usually stage 3-4.

The visit to UTH Thursday morning was very sobering and had a deep impact on both Dr. Michelle Meiring (Red Cross Children’s Hospitals, Cape Town, South Africa) and me.

In addition to physical pain, we saw so much emotional pain in the faces of the children and their caregivers — such a need for palliative care and for support of their amazing staff that are doing what they can with what they have.

One case that struck a deep cord with us was that of a wonderful dad who has spent a year at the bedside of his son but now has to go home, so won’t be able to complete the second year of treatment for leukaemia. What a difficult decision to make! I also chatted to a mom whose daughter (just diagnosed with AML) is one of a set of twins. Mom comes from the Eastern Province, so will not be able to go home and will have to spend a year or more at the bedside on a chair next to her daughter.

I believe there are no facilities for parents to sleep. There were 34 patients crammed into two small wards. Probably many of these children could be receiving outpatient chemo, which would decrease the crowding if there was family accommodation nearby. It looked like they had run out of some of the chemo drugs, which probably means they need to be more selective on who they treat and don’t. Lots of ethical dilemmas in that ward. There was one patient with relapsed leukaemia who they didn’t have chemo for.

There are only two pediatric oncologists in the hospital, plus pediatric residents; treatment protocols are from the U.S. or U.K. The children do NOT have any central lines, meaning intravenous access is very difficult. Many children received morphine. However, painful procedures such as lumbar puncture and bone marrow aspirations were not done with any analgesia/sedation. (I worked with the team to introduce ketamine/benzodiazepine OR nitrous gas, both which is available in the hospital.)

The unit has NOT partnered with any African or Western pediatric hem/onc Center. They need our help!

Dr. Stefan Friedrichsdorf, director of Pain and Palliative Care and Integrative Medicine at Children’s, is on a two-week trip overseas to train caregivers about pediatric pain management.

This week, he’s in Zambia, Africa, for the  1st Annual Pediatric Palliative Care Symposium. He will teach more than 150 professionals at an event sponsored by the CDC/Atlanta and the US President’s Emergency AIDS Fund. Next week, he’ll be in Cyprus for “Advanced Pain Medicine & Palliative Care for Children: Workshop for Professionals in Pediatric Hematology / Oncology,” where he’ll teach the Middle East Cancer Consortium about pediatric pain management, teaching Israelis and Arabs in the same room, united by a desire to help children in pain. Read all posts about his trip.

Wednesday, Nov. 23

Quotes from a panel discussion about spirituality in the context of pediatric palliative care here in Zambia:

“Dead ends a life, but not a relationship. Loss and grief starts at time of diagnosis — everyone is dealing with it their own way. ‘I felt like having a hole in me’ — deep grief. If you lost a child, you’re wounded for life. Woundnessness is nothing to be ashamed about.”

“In Zambia, the vast majority go to church — blessing and baptizing are very important. The best gift we can give to siblings and class mates is to talk about them. Good teachers may say ‘Hey, it’s been a month since Zimarace has passed away. Let’s talk about him — let’s draw a picture. How he is in heaven.’”

“In African tradition, there are powerful traditions right after death of a loved one: Mourn very hard for a very short time, but then be expected to be ready for normal life on the outside. But on the inside it takes years and years … . One of many traditions: one year after death, there is a gravestone laying.”

“In our hospice we assess the children and their spirituality by asking them to draw a picture.”

“Isn’t it great we have emotions? Laughter, love … and deep grief. We have children who lost their parents and now are loosing a sibling -– they feel guilty about not being HIV positive. I have cared for children who were in boarding school and were not told their mother died. She went to the village.”

“How do we support HIV positive siblings who saw family die — hopefully with dignity, but maybe not. How about children at school who had a classmate, and suddenly don’t have her anymore? How do we allow them to show their feelings, through music, drama … it’s a challenge.”

“Most people get support from their community — only few display complicated grief and might need a therapist.”

“What to do about grieving families who want to remain in contact with the hospice teams, but they are too busy and need to move on. Successful models, e.g. in South Africa, Uganda, Malawi, seem to include network with the community and especially the powerhouses in Africa, the churches.”

“Most of us pastors are poorly trained — often a good preacher but poor training. Most of us are afraid to go hospitals.”

“Queen Elizabeth II said ‘Grief is the price we pay for love.’”

Dr. Stefan Friedrichsdorf, director of Pain and Palliative Care and Integrative Medicine at Children’s, is on a two-week trip overseas to train caregivers about pediatric pain management.

This week, he’s in Zambia, Africa, for the  1st Annual Pediatric Palliative Care Symposium. He will teach more than 150 professionals at an event sponsored by the CDC/Atlanta and the US President’s Emergency AIDS Fund. Next week, he’ll be in Cyprus for “Advanced Pain Medicine & Palliative Care for Children: Workshop for Professionals in Pediatric Hematology / Oncology,” where he’ll teach the Middle East Cancer Consortium about pediatric pain management, teaching Israelis and Arabs in the same room, united by a desire to help children in pain. Read all posts about his trip.

Tuesday, Nov. 22
I visited the farm of “Tiny Tim & Friends” here in Lusaka, Zambia.

Background: It was Tiny Tim’s story that inspired friends and family around the globe to get involved.  As a result, Tiny Tim & Friends was created.  To date, Tiny Tim & Friends has helped hundreds of HIV infected orphans and vulnerable children in Zambia receive essential medical care and educational support.

In 2003, a woman with AIDS, seven months pregnant and living in a bus terminal in Lusaka, Zambia, was found by the good sisters of Kasisi Children’s Home.  After delivering the baby, Tim Meade, MD, from Minneapolis, and a team of volunteers took turns bringing warm formula to the child.  Unable to care for her newborn son, the mother asked “Dr. Tim” to take care of the baby.  As a sign of gratitude, she named the baby Tim.

On the farm there are currently 13 boys — most of them orphans, which are referred by hospice. They are often started on 2nd line antiretrovirals (twice daily, if younger than 12 years, once daily if older) under supervision of social worker or Dr. Meade to improve compliance, and to get them fed and back to school. Usually after 2-3 months, they are placed back into their families (usually grandmothers or aunts, who carry the brunt of the AIDS catastrophe here).

The “app” Balloonnimals on my iPhone clearly was a big hit among the kids.

Dr. Stefan Friedrichsdorf, director of Pain and Palliative Care and Integrative Medicine at Children’s, is on a two-week trip overseas to train caregivers about pediatric pain management.

This week, he’s in Zambia, Africa, for the  1st Annual Pediatric Palliative Care Symposium. He will teach more than 150 professionals at an event sponsored by the CDC/Atlanta and the US President’s Emergency AIDS Fund.

Next week, he’ll be in Cyprus for “Advanced Pain Medicine & Palliative Care for Children: Workshop for Professionals in Pediatric Hematology / Oncology,” where he’ll teach the Middle East Cancer Consortium about pediatric pain management, teaching Israelis and Arabs in the same room, united by a desire to help children in pain.

Here are his first reports from his trip:

Monday, Nov. 21
Arrived in Lusaka, capital city of Zambia in Africa on Sunday night. Following a peaceful transition of power (the last coup attempt was eight years ago) last month, a newly elected government is in charge here.  The old president admitted defeat in a recent election and stepped aside without any power struggle — pretty unheard of in this part of the world.

The First Annual Pediatric Palliative Care Symposium opened in Lusaka,  Zambia.  There are more than 150 participants (mostly physicians and nurses, but also social workers, chaplains, health ministry administrators, psychologists).  The energy in the room is palpable.

Morphine only became widely available in Zambia about a year ago.  When I asked in my keynote about opioid myths, the answers were exactly like we hear in the U.S.:

• Fear of addiction (Fact: children don’t become addicted when treated for acute pain)
• Fear of respiratory depression (Fact: carefully administered morphine does not cause respiratory depression)
• Fear of starting too early (Fact: when a child is in severe pain morphine must be started immediately – there are always enough treatment options later in the disease cause or at end of life)

Tuesday, Nov. 22
The second day of the conference was opened with traditional Zambian drummers, singers and dancer (joined by participants in the audience!).

Palliative Care means to live as long as possible as well as possible.

There are 6.8 million children younger than 18 years in Zambia. In Western Countries the prevalence of a life-limiting condition (cancer, genetic aberrations, neurodegenerative diseases, muscular dystrophy etc.) is 12 out of 10,000 so we would expect 8,100 affected children in Zambia in need of palliative care. Unfortunately, there are an additional 120,000 children in the country with HIV/AIDS … 120,000 children younger than 14 years! This is a true catastrophe … especially since only first and second line antiretrovirals are available. 1.3 million children under 17 here are orphans (690,000 due to AIDS). See the full statistics.

I visited the Pediatric Wing at Our Lady’s Hospice in Lusaka: six beds in a 300-square-foot room. I chatted with a 15-year-old boy with Class IV HIV on 2nd line antiretrovirals and palliative cancer-directed therapy who is in the terminal phase of life. He likes watching soccer and told me Manchester United is his favorite team. He has a difficult social situation (one-room house, six siblings), so he has spent a lot of time in the Pediatric Hospice House. He has now presented with a large open Karposi sarcoma on his leg extending into the abdomen. He receives pain and symptom control (on schedule plus as needed morphine) by the amazing team from Tiny Tim and Friends led by Tim Meade, MD from the Twin Cities (named after his little adopted son).  Dr. Meade is my host here.