Bring Light to a Six-month old Blind Baby Girl (Long Xuyen, Vietnam)

Last Updated Saturday, November 27, 2010

 

RS4K Goal:           Initial Objective is to assess if the eyes can be corrected.

Patient:                Nguyen Huynh Thanh Ngoc (Thanh Ngoc Huynh Nguyen)

DOB:                     06/24/2009

Address:               Ap Tay Khanh 5, To 33, Phuong My Hoa, An Giang Province, Vietnam

Phone:                  0918332950

 

Photos/Ultrasound taken on November 30, 2009




             

Family and Past Medical History:                            

Second child to the mother, older brother is healthy and the mother works at Hair/nail salon,

Been born with C-section at full term and weighted 3400 gram at birth, normal growth accept the eyes problem,

Nobody in the family has the same illness.

Family member discovered that both of the child's eyes didn't follow the objects.  There is a White Dot inside Left eye and the Right eye is shrinking day after day.  Mother took the child to see many different doctors to seek help and been told the child has eye cancer.  Doctors in Vietnam suggested the radiation treatment and removed the eyeballs to save the child's life.

Possible DX:      

We took the child to Dr. Liem and Dr. Tho in Can Tho city, Vietnam to get second opinion and also obtained the Eyes Ultrasound. 

Right Eye: Shrinking eye and losing functionality.

Left Eye: Possible Retinoblastoma.

Dr. Neima's Assessment (Jan 2, 2010)

"Based on the history and the ultrasounds it does look as if the baby has a retinoblastoma, a life threatening retinal cancer. Both radiation and chemotherapy are used to treat it. It sounds like the rt eye is phthysical and unlikely to get sight back. The ultrasound shows advanced disease in the left eye too making the visual prognosis limited. Urgent treatment is needed to save the baby's life however. The diagnosis can't be made from the us alone but this is a disease that most ophthalmologists would recognize on exam. Dr david Neima"

"Thanks for your efforts for this baby. Radiation and chemo are the standard of therapy for advanced disease which this baby has. Surgery alone is unlikely to be successful if this indeed is retinoblastoma.I do believe that this treatment can be done at St Paul's in saigon. I'm not sure what the cost in Vietnam would be but I'd guess at some thousands of dollars. In the us it would be in the ten thousands. There is a pediatric ophthalmologist in Saigon that either paul or Fr Tran were in contact with, I'll cc this email to them and ask them to send you her info, she would know the best way to proceed. Time is important, if it is a retinoblastoma, it's usually fatal if untreated, Yours sincerely, david Neima"

Dr. Katz's Assessment (Jan 5, 2010)

"it sounds as if this child has an ocular tumor, perhaps a retinoblastoma. She needs to be under the care of someone who specializes in this very serious situation, both life and sight threatening. I don't know of anyone in Vietnam. Perhaps Dr. Neima can be of help. I wish I could provide more help. Let me know if there is anything else I can do. Best to you and Tom, Jeff"

Dr. Chi Lan from St. Paul Hospital in Vietnam will help us with the case (Jan 9, 2010)

We have communicated with Dr. Chi Lan on Saturday night Chicago time (Jan 09, 2010) via phone and email and asked her for help regarding the treatment for 6 month old baby girl. Dr. Chi Lan agreed to help us taking on the case and told us that It would cost around $2000 USD for the treatment. We will discuss for the case's approval with RightStart4Kids' s board members on Jan 15, 2010.

On Jan 11, we received an email from Dr. Chi Lan letting us know that the baby's family member have already contacted her and Dr. Chi Lan gave them an appointment to bring the baby to St. Paul Hospital the next day (Jan 12) for evaluation. Dr. Chi Lan will email and let us know more details regarding plan of treatment after seeing the baby tomorrow. Below is a copy of an email from Dr. Chi Lan in Vietnamese

"Toi da nhan duoc mail cua anh. Sang nay nguoi nha be Ngoc da phone cho toi roi va toi co hen gia dinh dua be len benh vien ngay mai de toi xem lai va quyet dinh phai dieu tri nhu the nao. Toi se kham cho be ngay mai va se mail cho anh biet be se dieu tri nhu the nao, va can lam nhung gi .Anh cu an tam. Xin chuc cac anh chi 1 nam moi an lanh va luon hang say phuc vu nguoi ngheo. Chi Lan"

Updates from Dr. Chi Lan after seeing the baby (Jan 12, 2010)

After seeing the baby, Dr. Chi Lan referred the baby to her friend, working at Cancer Institute for the treatment. The baby could be admitted to Cancer Institute tomorrow and they will look up her old record when she was 2 months old. Dr. Chi Lan also proposed on the fee that we could pay for the treatment and waiting for the approval from Cancer Institute. Dr. Chi Lan will send further updates when she hears more from Cancer Institute.

Tom than men, Be Ngoc se qua BV Ung Buou ngay mai, va hy vong se nhap vien luon. Minh da nho ban o BV Ung Buou luc lai ho so cu luc be nhap vien lan truoc, khi do 2 thang tuoi, do gia dinh ngheo qua nen tron vien ve. Bi gio be 6 thang roi. Hy vong khong co gi tro ngai. Chi phi bao nhieu toi da bao voi BV ben do roi, gia dinh be Ngoc khong phai lo tien bac gi ,cu the khi nao BV nhan voi toi ve chi phi , toi se bao cho Tom biet . Chi Lan

Further update from Dr. Chi Lan (Jan 26, 2010)

Dr. Chi Lan has asked a friend over Cancer Institute arranging everything for baby Ngoc and today the doctors have sat down and come up with the plan to start the treatment.

Couple days earlier, the baby's family member has asked to stay with an aunt in Saigon while waiting for the insurance paperwork arrived from Long Xuyen.

Dr. Chi Lan's friend over Cancer Institute has instructed the family member to apply for the insurance (child under 6 years old) and if qualified, the treatment fee would be minimal. Dr. Chi Lan thought the family might need expense money and gave the mother a Million Vietnamese Dong.

Dr. Chi Lan will give us more information tomorrow when she has more. If the baby Ngoc will be treated as an out-patient, then Dr. Chi Lan could arrange for the family and baby Ngoc to stay with the Nun.

Anh Tom than men , Toi da nho ban o BV Ung Buou sap xep cho be Ngoc, va hom nay be da duoc hoi chan de bat dau dieu tri . May hom truoc, gia dinh xin cho chau ve nha nguoi di o Saigon, trong luc doi chuyen giay to bao hiem cho be tu Long Xuyen len. Co ban o BV Ung Buou da huong dan de be duoc huong bao hiem cho tre < 6 tuoi (Insurance) , va duoc nhu vay thi phan dieu tri trong BV ton kem rat it. Nen toi nghi gia dinh can chi phi an uong , va da gui cho Thao 1 trieu. Ngay mai co tin tuc them toi se bao cho Tom biet . Neu be Ngoc phai dieu tri ma khong can nhap vien, toi co the gui cho 2 me con tro o nha cac Soeur duoc. Than men, Chi Lan

Updates from Dr. Chi Lan (Mar 1, 2010)

Baby Ngoc went back to her hometown (Long Xuyen) to celebrate her first Lunar New Year. She completed all her lab works before she left Saigon. Baby Ngoc already came back to the Cancer Institute in Saigon this week and ready for her chemotherapy. Baby Ngoc will receive one Chemotherapy per month for at least 6 months. Each time doing Chemotherapy, the baby has to stay in the hospital for a week and then go home for 3 weeks and come back in again for another chemotherapy. Dr. Chi Lan plans to give baby Ngoc's family member $10US/day for meals and some extra money for additional medicines and transportation each time since insurance will take care the chemo portion.

Tom than men, Dung la be Ngoc da ve que an Tet vi truoc Tet da lam ca xet nghiem va hoan tat cac thu tuc de tuan nay bat dau chemotherapy. Tuan nay be Ngoc len benh vien roi, va minh nghi moi ngay se chi cho 2 me con 10USD de an uong trong benh vien, vi tien thuoc da duoc bao hiem chi tra, phan thuoc nao thieu minh se tra them sau. Moi dot chemotherapy nam benh vien khoang 1 tuan, sau do be ve nha, thang sau tro len benh vien lai de tiep tuc chemotherpy. Binh thuong thi it la 6 dot chemotherapy nhu vay. Neu Tom dong y nhu vay, minh se chi cho me con be Ngoc , va ca tien transport di ve moi dot. Hoac co y kien gi khac thi Tom cho biet nha. Chuc Tom va gia dinh mot nam moi an khang hanh phuc nha. Chi Lan

First Chemotherapy completed for baby Ngoc (Mar 15, 2010)

Baby Ngoc has received the first Chemo this week and already went back home to rest. She will be back next month for another set of Chemo. Dr. Chi Lan already got $300USD from PaulDinh and gave the entire $6Million VND equivalent to the Dr. at Cancer Institute to care for baby Ngoc directly. Dr. Chi Lan will let us know if there is something special.

Tom than men, Be Ngoc da chemo 1 dot roi, va da ve nha nghi , 1 thang sau se vao tiep dot 2. Toi da nhan cua Tuyen dua 6 trieu dong de giup cho be Ngoc. Va toi da dua cho chi ban lam viec o BV Ung buou de lo truc tiep cho be. Co gi dac biet them , toi se bao cho Tom biet. Than men, Chi lan