A teenager eroded by "scoliosis"

(Xiao Ding's growth rod broke again and pierced the skin.
)

.
PART

1

Poverty and disease are intertwined

This is Xiao Ding's 8th surgical treatment, this time he received treatment at Shenzhen Children's Hospital, and this year he is 12 years old
.

12 years ago, Xiaoding was born in a village in Chengdu, Sichuan Province, when Xiaoding's father, who rode a tricycle for a living, was already more than half a hundred years old, and despite the family's four walls, the joy of the old man still surrounded the new family
.
But soon, a trip to the doctor shattered that joy
.

Xiao Ding suffered from hernia at birth, in the local treatment, the doctor also found that he suffered from congenital scoliosis, illiterate father is very dazed, did not expect to just usher in his only child was plagued by the disease, scoliosis, perhaps in the eyes of ordinary people is just a medical term, but for Xiao Ding's father This is a strange word that he has never heard of, can this disease be cured? Is it a high cost of treatment?

Xiao Ding's father lived in the countryside of Sichuan for most of his life, almost never read books, only spoke dialects, and lived by riding a tricycle all year round, which is the only economic source of the family, his own farming is also considered self-sufficient, Xiao Ding's mother is intellectually disabled, basically unable to participate in any labor, this family relies on the physical work of his father alone to maintain a family of three meals and four seasons
.

When Xiao Ding was 2 years old, his mother with intellectual disabilities suddenly left them and disappeared, leaving his father to raise Xiao Ding
alone.

Xiao Ding's father's confusion actually comes from the fear of disease and extreme economic difficulties
.

"10 years ago, because of scoliosis, I and Xiao Ding began to intersect, his condition was very serious, basically there was no hope of treatment, his family was very poor, the local medical resources were very poor, and no one in his area could give him orthopedic surgery on the spine, and I saw him as a more serious state
.
"

This is the initial impression
of Professor David Roye, who has been the chief surgeon for Xiaoding for 10 years.

When he was young, Xiao Ding did not have much worry about the disease that happened to him, because he was far from realizing how much this disease was a terrible blow
to his body and to his poor family.

Since then, Xiao Ding and his elderly father have traveled through many cities together, and the destinations are all hospitals
without exception.

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PART

02

treat

The foundation's love and support to a certain extent brought Xiao Ding's misfortune to an end
.

Xiao Ding is lucky
.

In 2012, 2-year-old Xiao Ding scoliosis 80 degrees, the current medical standard for the need for surgery for scoliosis is that the angle of scoliosis reaches 40 degrees or more, Xiao Ding has reached the indications for surgery, when his balance is very bad, and the torso is far to one side
when standing.

After receiving the first scoliosis growth rod orthopedic surgery in Chengdu, Xiaoding's situation quickly attracted the attention of the CCPF Foundation, which arranged for Xiaoding to conduct public welfare surgery for the medical team of the New York Presbyterian Hospital led by David Roye, and with the growth and development, Xiaoding's spine also changed, in 2013, 2014, 2015, 2016, 2018 and 2020, Xiaoding successively in Nanjing, Shanghai and Shenzhen performed 5 growth rod lengthening surgeries
.

(CCPF Foundation Ms.
Jin and Xiao Ding's group photo)

Surgery accounts for a large proportion
of Xiaoding's growth.

Both the frequency of the operation and the physical and mental impact of the operation itself are beyond the range
that a 12-year-old can bear.

But also because of the continuous travel to and from various hospitals over the years, Xiao Ding is now very familiar with the process of surgery, the degree of cooperation is very high, and the tolerance is getting stronger and stronger, or in other words, he has been honed
to be stronger and stronger.

This is Xiao Ding's state before the operation in 2016, and he shows his lively and cute side
in the video.

The surgery in July this year was a very important operation for Xiaoding, a radical surgery that was more difficult and riskier
than previous growth stick surgery.

(Preoperative appearance photo: The growth rod breaks the rod and pierces the skin)

This year, Xiao Ding is 12 years old, and due to the recent development of the growth rod broken bar, the scoliosis is more obvious, the balance ability is relatively poor, and the center of gravity is off the midline, which is very unfavorable to the
spine.
Now that Xiaoding's growth and development has reached a stage, Professor Roye, who has been giving Xiaoding the main knife, decided to give him a radical surgery
this year.

The biggest challenge of this surgery is to maintain the growth of the spine under safe conditions, keep the torso balanced in the front and side, reduce scoliosis, and make it as safe as possible without complications
of paralysis.

And because of the epidemic, Professor Roye could not cooperate with the medical team in the United States on the spot, so the medical team was replaced by cooperation with the spine surgery department of Shenzhen Children's Hospital, which also means that both sides need to spend more time and energy on preparation
before surgery.

(Professor Roye examines Xiaoding before surgery)

In July this year, Xiao Ding had surgery
as scheduled.

"During the operation, when trying to correct his spine after the nail was inserted, he experienced a transient loss of neuro-electrophysiological signal, in fact, this situation is that in the process of orthopedics, his nerve function is disturbed, resulting in a loss of monitoring signal, which is a very dangerous situation
.

If his neuroelectrophysiological signals continue to be lost, he may be at risk of
paralysis after surgery, even if scoliosis improves.
This is one of the hardest places
during surgery.

Fortunately, Professor Roye and I were well prepared for this condition before surgery, so we adjusted our strategy during the operation and focused more on restoring his spinal balance than on correcting scoliosis
.
This way our pulling of the spinal cord reaches a fairly safe level
.

Finally, his neuro-electrophysiological signals began to recover, and his condition tended to stabilize, eventually achieving the desired therapeutic purpose
.
”

Dr.
Xu, who was involved in the entire operation, said
.

"We made a very good preoperative preparation for this case, although these episodes appeared during the operation, but in the end, after changing the strategy, we got a more ideal result
.
"

His torso had regained its balance, a week after the operation, he was basically painless, the wound healed quickly, I watched the video of him walking, in the video he came from the corridor facing him, with a long-lost smile on his face, compared to the previous always serious him, I was very happy to see his change
.
”

Professor Roye recalls the intersection
between Xiao Ding and Xiao Ding.

(Preoperative and postoperative comparison chart, postoperative film shows that the torso imbalance can be better corrected)

At present, Xiaoding has been discharged from the hospital and is in
rehabilitation training.

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PART

03

The road ahead

In March this year, Xiao Ding's father was unfortunately diagnosed with advanced liver cancer and died in July
.

"In fact, we postponed the repair surgery on Ding, and considering that his father had advanced cancer, we realized that his father's life had entered the countdown, and we had to consider how Ding's feelings were
.

His situation made me realize that we were facing more than just a technical challenge, but also emotionally challenging
.
”

Professor Roye said
.

Sometimes it is curative; Often helps; Always go for comfort
.

We can see Professor Roye's humanistic care
as a practitioner.

The family's changes pulled Xiao Ding into the bottom at once, he gradually became silent, the advent of illness, the death of his relatives, the unknown future, these elements superimposed to piece together the relatively gray background of Xiao Ding's life
.

Fortunately, there are still many relatives behind Xiaoding, and the foundation also said that it will continue to give Xiaoding treatment funding, and they have become Xiaoding's rescuers in this low period of life, and these cares have dispelled many of Xiaoding's grief
to a certain extent.

"He is at a low point in his life, but I hope he can know that there are many people who still care about him, care for him, many people are trying to help him, and I hope that he will not give up on himself at any time and try to learn life skills
.
"

At the same time, our medical technology is constantly improving, and they can be adequately treated
.
I hope that this type of patient will be more active in facing reality and trying to seek help, such as foundations, schools, and social organizations
.
Of course, our doctors will do their best to help them
.
”

Dr.
Xu was impressed
.

Xiao Ding's future road is still very long, how to reconcile with suffering and game with fate, is a lesson
that Xiao Ding will learn in the future.

(12-year-old Ding)

We also wish that every "little ding" can live out their own background
.