We have concluded our work here in Can Tho and tomorrow ~ Wednesday ~ will travel to Saigon (Ho Chi Minh City) to begin our work at the Pediatric Hospital #1 there, beginning on Thursday morning.
Today was quite a busy, busy day, as we screened an additional 56 patients (which with yesterday's 50 gave us a grand total of 106 total). I believe the surgeons will be doing 40 surgical cases, beginning tomorrow and ending on Thursday, April 1st. They will be very busy!!
There were many more structural cases today ~ patients with more foot/ankle deformity due to polio and a few less kids with neurological issues ~ which took us more time to assess and to come to agreement on how to proceed surgically, if appropriate. Lots of good work and good collaboration was had though and as I feel I can say during each and every mission trip I do with this group, I continue to learn so much and enjoy the collaboration with this team.
I have taken on a new role within the team this year, which is a challenging role for me, but feel I have done a good job. For situations where the patient has more significant needs or more global needs, I have now taken on the role of explaining to the patient and/or family that there is no surgical intervention that can help them or heal them, as this is the question we get asked the most. I have always enjoyed working with families and with help of our interpreters, especially Mai, was able to have several challenging conversations today and yesterday.
There were 3 situations that challenged me greatly and were the 3 patients that I knew if I was seeing in the US for an evaluation there would be many more options to help them with independent mobility than I can offer them here. Here's a little about each one...
This 16 year old boy was awesome! He has cerebral palsy and is not a surgical-candidate, but really, really wants to walk. The likelihood of this happening is small, but he is so motivated as is his family, so we are going to try and connect him with the right medical team to see what can happen. He told me ~ he's incredibly intelligent ~ that he had made himself a brace for his legs out of materials he had in his house, but that they don't fit right and are uncomfortable. I am going to talk with the Rehab Department Director at the Pediatric Hospital #1 in Saigon when I get there on Thursday about bringing this boy to see the Neurologist at that hospital for some management of his high muscle tone and also to explore some other treatment options. His grandmother and he were interested in going to Saigon to see what they can do to help and I told them I would make that connection. I was also quite clear with them ~ repeating this many times ~ that there are no guarantees that he will walk, but his motivation and interest are very, very high, so I think it's only fair to give him a chance. Cool, cool kid!
I also met a little 4 year old with a diagnosis of arthrogryposis multiplex congenita, a condition in which the child is born with multiple contractures of his joints. In this boy's case, he was born with elbow contractures, wrist flexion contractures, finger anomalies (limited movement and strength), and hip/knee/ankle contractures. This little boy will never learn to walk or run, which I had to tell his mom and she was understandably very sad. He is a very bright and intelligent little boy, who really wants to go to school, as does his mom want him to go to school. Unfortunately, in Vietnam presently, unless you are a typically-developing and typically-functioning child, you do not get an education and stay home with your parents. There are a few private classrooms for children with moderate to severe disabilities, but these are more day-care-like entities, rather than educationally-driven environments. So, this very smart little boy, who wants to go to school, will never go to school. So, I talked with his mom about all of his strengths ~ there were many ~ and about how she can be his teacher. She seemed bolstered in the moment by this idea and said she always liked school and thought about being a teacher, so I told her this would be her chance...to teach her own son. I also talked with her about, perhaps, in the future being able to get her son a device that folks with varying functional impairments use for mobility to traverse around the streets, etc. I call it a hand-cart, but am not sure of its best title. Here's a photo of one...
The user moves the circular device in the middle back and forth to cause it to move, as well as this device also allows for steering. I think this little boy would be able to utilize a device such as this when he is bigger and then he would gain some independence. We had given him a page of animal stickers and while mom and I were talking, he managed to take off several of the stickers by using his hands/feet together to peel them back and his legs were then covered with a cow, a duck, a dog and a pig sticker. He's amazing...but made me sad, as there is such limited help I could offer him today. I think after our conversation, his mom was still sad ~ of course ~ but feeling a little more hopeful. He then did one of my most favorite things here in Vietnam that children do...he crossed his arms across his chest (as best he could) and then bowed forward, saying 'cam on' (thank you). This is something children are taught to do here as a sign of respect for adults. It's so endearing and lovely.
The last really challenging conversation I had with a family was with the mom of a little 5 year old girl, born with a structural deformity and malformation of her right leg. In this deformity, the leg bones don't develop properly and some of the bones are missing, including the big leg bone below her knee, as well as her foot was positioned backwards on her leg, making the whole leg non-functional for her. She also was of typical, age-appropriate intelligence and was not scared by all of the medical team engaging with her. For children born with this anomaly, the typical management of it is amputation of the non-functional components of her limb, leaving as much of her limb which is more structurally typical and then fitting her for a prosthesis so she can learn to walk. Currently, she will hop on her left foot quite fast and independently, but this isn't a great plan for the long-term. So, as a team we discussed our recommendations and needs for a prosthesis for this little girl, so I talked with the Vietnamese orthopedists about whether or not they would be able to fabricate a prosthesis for her. They would be able to at this hospital, so the next step was to talk with the mother about the recommendation. So, our team asked me to have this conversation with the mother, as we wanted to emphasize the functional gains and independence with walking she can obtain following this surgery and how the prosthesis will be utilized for her independence. This isn't a conversation I have ever had with a patient's mother/family, so I was a little nervous to say the least. So mom, the little girl and our interpreter, Mai, were in a more private area and I began explaining our team's recommendation and why we were making such a recommendation. I explained once she was healed from the surgery she would be fitted with a prosthesis to begin working on walking. I have very little concern that this child will not be able to figure out how to walk once she has a prosthesis. As parent's often do, her mom surprised me greatly when she said (via interpreter) that she was thinking this would be the recommendation and that she would like to do it, so that her daughter can go to school.
This is her foot, which is not properly positioned, nor which is functional for standing or walking. |
Mom also shared with me during our conversation that for the past 4-6 months, the little girl has been asking to get a 'plastic leg' so that she can walk by herself and go to school! The little girl told our interpreter that this is what she wants to do.
So, she is scheduled for surgery next week and I think this surgery has the great potential to provide this little girl with such a change in her life and will allow her to go to school, just as she wants to do.
So, I am a little exhausted tonight, as these are just 3 examples of some more challenging cases, but there were many more that were interesting and provided our team with good opportunities to help many people.
Saigon tomorrow ~ our only non-working day, so we're going to go to our favorite Saigon spots and enjoy our time. One small note ~ today was the nicest 90 degree day I have ever experienced in Vietnam in the 5 times I have been here. Wonderful breezes and limited humidity! Yay.
Off to sleep now...
xoxo
Stacy
For the record, you did an amazing job. You're always a critical part of the screening team, but this year took on some of the toughest conversations possible. You communicate with families in such a caring way that you still bring hope to people who want miracles the IEP team can't provide.
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