Born with a rare bone condition, young girl P.T.T.A. (Soc Trang) endured constant pain day and night. She has undergone 11 surgeries, and only now is her condition is beginning to improve.

Enduring Daily Pain from a Congenital Bone Disease

Sixteen years ago, while bathing her 3-month-old daughter T.A., Ms Hanh (b.1984, from Soc Trang) was alarmed to discover a tiny lump on her daughter’s right arm. She took T.A. to the local hospital, where doctors said the small lump was harmless and advised the family to monitor it. However, over time, the lump grew larger, and many more lumps appeared on all of T.A.’s arms and legs.

By the time T.A. turned four, the areas with the lumps began causing her significant pain, making walking and gripping objects difficult. After visiting Children’s Hospital 2 in Ho Chi Minh City, Ms Hanh was devastated when doctors diagnosed T.A. with a rare condition: her cartilage was “growing roots” into tumours that compressed her nerves, causing severe pain and surgery was necessary to address the issue. The first surgery relieved the pain in her ankle, but doctors warned that the tumours would likely continue growing and causing further discomfort.

As predicted, shaving the bone only temporarily resolved the issue. The tumours continued to grow larger, and the previously shaved lump would regrow within 2-3 months.

When T.A. entered first grade, her pain became more intense. Heartbroken by her daughter’s condition, Ms Hanh had no choice but to take her out of school and bring her to Ho Chi Minh City to begin a series of treatments at various hospitals. Every year, T.A. had to endure 1-2 surgeries to remove the tumours. “Each time I heard my daughter cry, ‘Mom, it hurts so much!’ I had to suppress my own pain and comfort her, ‘Stay strong, sweetheart, I’m here with you,'” Ms Hanh tearfully shared. The numerous surgeries left T.A.’s body covered in scars, a painful visual reminder for her mother every time she looked at her.

The lives of Ms Hanh and her two children in Ho Chi Minh City have been a constant struggle. Ms Hanh took on any job she could find, washing clothes, helping at a rice shop, or working at a sugarcane juice stall whilst saving every penny to pay for her daughter’s medical treatment. T.A.’s older brother also had to drop out of school early and start working at a wood workshop to help support the family.

Fortunately, in 2021, the Children of Vietnam Charitable Fund learned about T.A.’s situation and provided support, helping her continue her treatment at FV Hospital.

“The day my child is cured will be the happiest day of my life”

Le Trong Phat, MD, PhD, Head of the Bone & Joint Centre at FV Hospital, who directly treated T.A., shared that T.A. suffers from osteochondromatosis, also known as hereditary multiple exostosis. This is a rare genetic condition characterised by the excessive growth of cartilage and bone.

“Typically, osteochondromas tend to grow around the joints or in joint areas, such as the knee, ankle, or hip. These tumours cause constant swelling and pain, which only subsides with painkillers,” Dr Phat explained. “However, surgery is only recommended when the tumours compress blood vessels or nerves, and painkillers are no longer effective. The disease progresses with bone growth, meaning once the patient’s bones stop growing, the disease will cease as well”.

X-rays revealed that T.A.’s body has numerous osteochondromas scttered across various areas. From December 2021 to July 2024, T.A. underwent four surgeries at FV Hospital, with financial support from the Children’s Charity Fund. Dr Phat performed surgeries to remove bone tumours in areas where T.A. experienced significant pain, such as the femur, tibia, and shoulder blade. Tumours that were not causing pain were left untreated to avoid excessive surgery, which could weaken the bones and hinder mobility.

“The surgical skill of Dr Le Trong Phat is excellent, so T.A. experienced less pain, and the stitches were more aesthetically pleasing. About three days after the surgery, she could walk normally, and her health improved rapidly,” said Ms Hanh excitedly after her daughter’s surgery in July 2024.

At 16 years old, after enduring 11 surgeries for osteochondromatosis, T.A. is full of hope for the bright future ahead. She is proud that she is still attending evening charity classes and helps her mother with household chores during the day. T.A. said with an innocent and optimistic smile, “I’ve had so many surgeries that I’m not as scared anymore. After this surgery, I hope I’ll be cured and won’t have to suffer the pain anymore.”

Having been by her daughter’s side throughout the battle with this cruel bone disease, Ms Hanh feels fortunate that T.A. has been treated at FV Hospital, where there are state-of-the-art international-standard facilities and skilled, dedicated doctors who have closely followed her condition over the past three years. T.A.’s fight against this relentless disease has been less burdensome and painful because of this.

“T.A. is now 16 years old, and according to Dr Phat, I hope that in 1-2 years, when her bones stop growing, she won’t need any more surgeries or suffer physical pain anymore. The day my daughter is cured will be the happiest day of my life,” Ms Hanh shared, her eyes filled with hope.