Lindsay’s Reflections on Week 1

Child Life at the Women and Children’s Hospital

Our first week in Ulaanbaatar at the Women and Children’s Hospital was nothing short of amazing. Throughout the week I learned much more than I could have ever anticipated and am so sad to leave the sweet patients, families and staff members I have met.

At the beginning of the week I was filled with a lot of anxiety and was unsure how my role as a Child Life Specialist would be viewed. Thankfully, I was paired with an amazing social worker who is familiar with child life and has a passion to provide similar services to the patients she works with. Chimgee Naraa, is currently the only social worker that provides services to a 680 bed hospital along with providing services to the 1,100+ employees that work at the Women and Children’s Hospital. In her free time she also volunteers as a clown and comes in on the weekends to open the playrooms so the children can have some sort of socialization since volunteers are difficult to find.

Throughout the week, Chimgee and I were able to provide activities in the playroom as well as distraction during a variety of procedures. Honestly, I think I quickly became known as the girl with the book bag full of goodies and as a result, developed a pretty cool fan club that consisted of 5-6 oncology patients who followed me around everywhere I went. As I got to know the patients a little bit better, I was able to provide medical play in a group setting to show how basic medical supplies could be used in a non-threatening way. Medical play allows the patients control over objects that are often associated with negative feelings or painful experiences. By giving them an opportunity to manipulate those objects, they become less scary in the eyes of a child. Since medical supplies are not as prevalent as they are at Wolfson Children’s Hospital, Chimgee and I had to improvise and use what we could find. Fortunately, an OR nurse gave us some gauze and tape so we could make butterflies out of medical supplies. Following this activity we managed to scrounge up some masks and went to the Hem/Onc playroom and facilitated a therapeutic activity with the masks we found. During this activity, each child could decorate their mask and then share what made them brave. It was so wonderful hearing their responses and as you can imagine, they had some pretty amazing answers. It was during this activity that I was reminded how fortunate we are and truly resilient these children are. One patient in particular decorated her mask with pictures of the toys I had given her throughout the week and when it was her turn to share, she looked at me and said that the gifts I had given her made her brave and no longer scared. I think it is important to keep in mind that I gave this sweet fighter a stress ball, a small thing of bubbles and some Play-Doh. That was all it took for her to feel special and most importantly, to feel brave. If that does not put things into perspective, I don’t know what would!

As the week came to an end, we began forming great friendships with the nurses and residents, all of whom are phenomenal people that work so hard to provide the best care possible for their patients. Each person we worked with had such a desire to learn and were all so eager to talk to me about Child Life. Many even felt comfortable inviting me in to assist with procedures such as IV starts and bone marrow aspirates on patients that weren’t sedated. Overall, it was an amazing experience and I only wish I could stay longer at the hospital. I will definitely think of the patients, families and staff we worked with and hope that their journey only gets better until the next time we are fortunate enough to return.

I also wanted send a huge thank you to the Soud family and Dr. Sandler for making this possible. I do not think I will ever be able to adequately tell you how much this trip has meant to me and how thankful I am for your support both personally and professionally. I have no doubt that Jonathan is beyond proud of this mission you have started and I feel so fortunate to have been a small part of it.

-Linds

Patients undergo all of their lumbar punctures and bone marrow aspirates while awake. For this procedure, Lindsay tucked herself into the corner and offered some pain relief via distraction.

Patients undergo all of their lumbar punctures and bone marrow aspirates while awake. For this procedure, Lindsay tucked herself into the corner and offered some pain relief via distraction.

Enjoying some bubbles and practicing deep breathing in the playroom. Bubbles are a great way to provide distraction and get any patient to focus on their breathing during painful procedures.

Enjoying some bubbles and practicing deep breathing in the playroom.
Bubbles are a great way to provide distraction and get any patient to focus on their breathing during painful procedures.

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“Play is the work of children”
Jean Piaget

So much of my heart now belongs to these brave fighters!

So much of my heart now belongs to these brave fighters!

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These 3 brave boys were so sweet and fun to work with. They followed me around everywhere I went.

These 3 brave boys were so sweet and fun to work with. They followed me around everywhere I went.

This little cutie was so happy playing with the bubbles that he did not even notice the procedure that was taking place.

This little cutie was so happy playing with the bubbles that he did not even notice the procedure that was taking place.

Day 7 Into our Trip -Jonathan

Day 7 into our trip, and day 4 at the children’s hospital completed! I continue to be amazed by this country, the city of UlaanBaatar and its people. Especially the people. At first they seem stoic but then you learn how open, caring and animated they can be. This was most evident as I met and began to work with the GI team at the children’s hospital. There are 6 GI physicians, each with their own well defined duties but working as a team to improve the care of their patients. The level of care is admirable considering the challenges they face: limited pharmacy formulary, limited laboratory and imaging (families must pay and go to a private adult hospital for a CT scan!), virtual absence of nutritional care, and a high  patient acuity level by the time they arrive at the only children’s hospital in Mongolia. Yesterday I met an infant with advanced biliary atresia who had to travel by car over 1000 miles to receive care. And these are but a few of the challenges that the dedicated staff face on a daily basis.

The hospital, with the exception of the new hem-onc wing is old and of Russian design. It is well worn and busy with narrow halls, low ceilings at times and buckled linoleum floors. It is however clean and appears efficient and orderly despite the high volume of patients.

The GI team is insular and eager to interact with same specialty colleagues. They presented troublesome patients daily, each time asking many questions about diagnosis and clinical care. The families themselves appeared very appreciative. My 3 lectures were well attended by the GI staff and residents, some lasting over 90 minutes.

As we begin to wrap up our clinical week and look forward to 4 days in the Gobi desert, I cannot help but think that this has been a profitable experience for all involved included the many Mongolian families that I have met. HI can only hope that the progress made and efforts expended will be ongoing and fruitful.

-Jonathan Evans

Mongolia Bound! Jonathan Evan’s Perspective

Mongolia Bound!   Bound being the word that should define our trip. No, I am sure that it doesn’t mean tied up and dragged by Eric S to the far reaches of our planet. Rather for me it means to have developed a bond with a land for which, at this point, I know little about. What will this bond mean to me? What will it mean to the people I meet?

I have been fortunate to have been placed in this situation before. Growing up as a minority in a culture that I was not born into and providing medical aid in impoverished Haiti come to mind. However, this will be a new situation for which it is unclear how well past experiences can prepare me.

Developing that bond will come at a price, the least being travel, the barriers of language and being out of one’s western comfort zone. The rewards however can be great: learning about a well rooted but mysterious (at least to me) culture, learning new customs, sharing conversations with people of different upbringings and perspectives. My curiosity about the “medical establishment” in Mongolia will further strengthen that bond. Does the medical profession view what we consider simple and common medical problems (e.g. chronic abdominal pain) and complex medical issues (e.g. chronic liver disease) the same way? What are the expectations of the patients and their families in regards to the medical care they receive?

As I explore these areas, and the others that will emerge once we are there, this bond will develop and strengthen. I am optimistic that it will be positive and durable on my end; hopeful that  it will be the same for the people who receive us.

Day Two – Ethan

Day 2 at the Women and Children’s Hospital.
     After getting a tour of the very confusing and maze-like hospital yesterday, it seemed a little bit more manageable today. This morning, I went on rounds at the Hem/Onc ward in the new building and saw several of the patients. It is amazing to me that the children were all so happy to see us and enjoyed playing with the toys that Lindsey, Sarah, and I brought. At one point while my dad was discussing cases with the Mongolian physicians, I poked my head into the hallway and saw that Lindsey and Sarah had gathered about 10 of the patients and were playing games, blowing bubbles, and bonding with the patients in the playroom. I must say, compared to what I have heard it was like when this project began 4 years ago, at least for Hem/Onc, the facilities have vastly improved. As a student, I learned what to look for as signs of disease and illness, and how to treat the different diseases which was all very interesting.
     After our lunch of chicken, rice, and beets, I sat in on Dr. Sheth’s lecture on seizures and my father’s lecture on Acute Lymphocytic Leukemia relapse treatment. I learned a lot watching the videos of different types of seizures and was really impressed by the Mongolian translator and the other physicians eagerly scribbling notes and asking questions. There were Mongolian physicians and residents from several different specialties, and I thought it was interesting that the Mongolian staff that was most engaged in the neurology and oncology lectures were the Cardiology residents that were able to attend.
The Mongolian physicians and staff have been so kind and appear appreciative of all the information and assistance that we are providing, but I worry about how much is being lost in translation, and what is not currently possible due to funding and availability.
-Ethan

Day One 2015 -Eric

Well we just spent our first day at the Women and Children’s Hospital. There have been some exciting changes since our last visit. The new oncology center has opened after several years of construction- it is really quite beautiful and well equipped. They even have a play room in the unit which is great to see. They also have several rooms which are devoted to the care of children post bone marrow transplant. The plan is that transplant will be done in the adult transplant facility (also a brand new program) and then transferred back to the children’s hospital for recovery. A scary thought since none of the current docs have any experience with transplant patients. I hope a plan will be developed for this transition. The other new and exciting thing is that starting in January, all the children with solid tumors, who are now taken care of at the National Cancer Center, will be cared for at the Children’s hospital. This is something we have been hoping to see for several years- but rather then a gradual transition, the plan now is for a complete change on January 1. The docs are excited but quite concerned as they have never taken care of any of these types of cancer nor do they know what the plan will be for more staff with a more then doubling of their patient volume. They are also very concerned about pathology support. It is both rewarding to see the small part we have played in helping to improve medical care for children here in Mongolia but also highlights the importance of keeping up our efforts to help.  This makes me more determined then ever to develop a more structured exchange system where we can bring the young oncology staff as well as pathologists to the US for 1-2 month observerships as well as have more frequent and consistent consultation by our team about diagnosis and treatment. 
 
To the Soud family- Jonathon’s legacy is clearly changing a small part of the world every day and thank you for letting us be a part of that legacy!
 
Eric