SUCCESS STORIES

CHETHAN

CHETHAN

Brief Story of Chethan:
Though Chethan was unable to open his mouth since birth, it became apparent to the family as a serious issue only when he attained the age of 3 years. Till then he was being fed only milk
From then on, till the age of 17 years, he lived on small pieces of bun being pushed in to his mouth along with milk or coffee.
The maximum weight he ever attained was 27 kilos, and, he remained at 27 kgs till 17 years of age. On interacting with the parents and the family, the most important issue of concern was that, at night, he would snore very loudly and would have at least have 10 episodes every night, of being unable to breathe at all. His father was concerned if he would live through it
The snoring was loud enough to be heard by neighboring houses that would often complain about it He invariably slept in a sitting position.
Chethan attended school and initially was performing well. He not only had very few friends, but the teasing and bullying he underwent, would make him ask the same question again and again, Why Me?
By 9th standard, he was being teased and bullied by his classmates due to his appearance and speech, that he felt embarrassed and stopped attending school.
When Chethan was asked, what was it that he dreamed to become, an engineer, or a doctor or an agriculturist, He replied promptly - 1 ONLY WANTED TO BREATHE NORMALLY"
Chethan underwent a series of surgeries , in order to achieve his current status of appearance and ability to open his mouth and eat normally.
In fact, his disturbed sleep pattern called sleep apnea completely reversed, and he no longer snores or has difficulty in breathing any more.
His heart also has reverted back to normal size and significantly improved function. His father has enrolled him to write his 10th standard exams in April 2017 after which Chethan hopes to get a job in Bangalore

ANANDA

ANANDA

Brief Story Of Ananda:
Ananda is a 9-year-old boy who presented to us with a condition called Curzon's Syndrome. Curzon's is a condition with multiple Cranio synostosis (premature fusion of the sutures in the skull which does not allow the face and brain to grow normally), as a result of this he had developed severe hypoplasia of the skull and midface leading to protrusion of the eyeball out of the socket (Exorbitism).
Prior to her surgery, Ananda was unable to close his eyes, which led to frequent redness and infection.
As his mid face was severely deficient, he had excessive snoring and was unable to breathe normally, which led to frequent episodes of disturbed sleep.
Due to the compression of his brain, Ananda was a shy and an introvert child, slow in his responses in the day-to-day activities including his fine motor skills.
Today he is active, confident and esthetically pleasing to look at.

SYEDA KOUNANI

SYEDA KOUNANI

Brief Story of Syeda Kounani:
Syeda is a 2 years old child who presented to us with a condition called Temperomandibular Joint Ankylosis, with no mouth opening.
This is a condition where the joint that helps in opening the mouth is fused to the base of the skull on both sides. This causes complete inability to open her mouth since birth.
As the growth centre of the lower jaw, is located in the joint region, there is retardation of the growth of her lower jaw, leading to severe breathing difficulty called Obstructive sleep apnea.(A condition, which reduces the life span by affecting the heart and the lungs).
Syeda had an emergency hole made in her throat to establish her airway. She underwent a procedure, where in, her jaw was grown to normal size using a technique called Distraction Osteogenesis,.
She has no breathing difficulties currently, and is able to play and move around comfortably. She is due for another surgery, to release her fused joints, so she can open her jaw normally.

SHILI

SHILI

Brief Story of Shill:
Shili presented with a very unusual combination of Curzon's Syndrome with exorbitism(Protruding eyeballs), and an elongated skull in the antero-posterior and vertical dimension.
Her extreme protrusion of eyeballs was due to shallow orbits and raised intra-cranial pressure.
The raised intra-cranial pressure was compressing the brain and had created dents in the skull bones.
She was a dull withdrawn child having difficulty in closing her eyes, difficulty in breathing and eating due to a small upper jaw and nose.
She was teased in school, being called frog eyes, due to which stopped attending school.
She had 2 staged procedures to correct her major deformities.
In the first procedure a special shunt was placed to decompress the brain and her skull bones remodeled to create more space for the brain and cover the eyeball.
6 months later, she underwent a second procedure to bring her midface and floor of the eye socket forward. This allowed the eyeball to settle down and restored normal breathing and eating.
Shill looks esthetically pleasing and is growing well. She is eager to resume school.

MUSKAN

MUSKAN

Brief Story of Muskan:
Muskan is a case of severe Orbital dystopia with Firbous Dysplasia.
She presents with the left orbit positioned 1 cm below the level of the right orbit.
She does not have binocular vision due to the dystopia, and affects her day-to-day activities. -She has a growth on the left side of her forehead compressing the brain and pushing the obrit down.
The left orbit is positioned way too inferiorly, for normal visual perception. This would lead to difficulties in seeing, reading and day- to day scholastic activities.
She has undergone her stage one surgery, where the growth has been removed, making space for the brain to re-expand. The upper part of her left orbit has been reconstructed. She is now able perform fine motor skills and other intellectual activities.

TAZAYUN

TAZAYUN

Brief Story of Tazayun:
Tazayun is a child from Kashmir who was born with a flat skull on the right side of his face called Plagiocephaly. This is a condition which restricted his normal growth of his brain. His right eye and orbit were sloping in an upward and backward direction, called Harlequin deformity. As his eyes were at different levels, he had to constantly tilt his head to see normally. This had led to an abnormal head holding posture.
He had a major surgery at the age of 7 months , where the bones of his orbit and skull were remodelled.
This surgery was performed to create space for his brain to grow and reposition his orbit at a normal level.
Tazayun is now 4 years old and has grown very well in to a sweet looking child. He is very sharp, intelligent and well integrated with his family and friends.
Tazayun was less playful before the surgery, as the frontal lobe of his brain was compressed, leading to increased pressure on his brain. His parents and relatives are thrilled with his development, and glad to see him grow normally.

DHYAN

DHYAN

Brief Story of Dhyan:
Dhyan is a 1 year 2 months old baby boy who was born with one of the rarest craniofacial clefts. It's a condition called Hypertelorism with TESSIER 0-14 Midfacial Cleft, involving the Orbit, Nose, Lip and Palate. He suffers with a lot of functional problems such as feeding , speech and breathing But the more unfortunate part is that he was abandoned by his parents because he was born with this deformity. He is a sweet child who is being brought up at an orphanage called Shishumandir in Bangalore. The orphanage is unable to get people to adopt him as the couples who come fear the complications associated with such major surgery. The Orphanage is awaiting completion of the Surgeries so they can then hope to find someone to adopt him.
He has undergone one procedure , where a facial Bipartition was performed . A significant medialisation of orbit and correction of soft tissue defects of nose and lip were performed.
He is now about 5 years old and is awaiting his next surgery.

CHETHAN

MANIKAMMA

Brief history of Manikamma:
Manikamma presented to us a few days old baby with an unusual very severe craniofacial cleft extending from the lip and palate, right up to the eyes. In fact, her eyeball was unsupported and could be seen directly through the big gap in her face. The component of her nose and central part of her upper lip was completely detached and away from the rest of her face leading to a very wide defect.

The foremost concern for her parents was, her undernourishment and lack of weight gain. With the help of counseling and special feeding techniques, the family could overcome the problem.

Fortunately, she has very supportive parents and grand parents, because of whose care; she attained normal weight and underwent a successful closure and reconstruction of her deformities.

She was operated when she was 1 year of age and now has grown up and is 4 years old. She presents as a sweet looking child with some minor scars, which will be revised soon. She is growing well and the family is looking forward to sending her to school.

TUJANNA SAI

TUJANNA SAI

Tujanna Sai was born with Agenesis in her left nostril. This meant that she had a normal right nostril and an inadequate left part of the nose. The condition distressed her parents; in pre-school, their child would be teased. Besides, the parents were embarrassed taking her to social gatherings.

Tujanna Sai was first operated when she was a year old. The parents approached INGA Health Foundation in May 2011 and their child underwent her first operation soon thereafter followed by a final operation in July 2016. The initial operations proved traumatic for the parents as the final results were not apparent. Following the completion of all stages, Tujanna Sai looks like any other child, bringing relief to her parents.

She is attending school, performing well and no longer considered a burden.

GANGAMMA

GANGAMMA

Gangamma is a 17 year old girl who presented to us with a condition of Bilateral Temperomandibular Joint Ankylosis.

This is a condition where the joint that helps in opening the mouth is fused to the base of the skull on both sides. This causes complete inability to open her mouth since birth.

As the growth centre of the lower jaw, is located in the joint region, there is retardation of mandibular growth, leading to severe breathing anomaly called Obstructive sleep apnea. (A condition, which reduces the life span by affecting the heart and the lungs).

Gangamma underwent 2 staged procedure, where in,her jaws were grown to normal size using a technique called Distraction Osteogenesis, and later on, the fused joints were released to allow her to open her mouth normally. She has no breathing difficulties currently, and can eat normally. Today she is active, confident and esthetically pleasing to look at.

ANISH

ANISH PANDEY

Anish is a 2 and half years old boy from Nepal, who presented with a triangular shaped skull in the forehead region (Trigonocephaly). He was referred to our centre in Bangalore as treatment for his condition was not available in his country. At that time he was 1year 10 months old.

The triangular shape that you see is the only part of the child’s brain, which has grown normally. On either side of the triangle, the head appears squashed. This means that the brain on either side of the triangle is severely compressed and under pressure.

In medical terms, the compressed portion of the brain is called the Frontal Lobe. This is that part of the brain which gives an individual his intelligence and alert activity.

Anish had a significant delay in his developmental milestones, which is an early sign of brain compression and decreasing intellect. Anish underwent a complex surgery, which involved recontouring his bones of the forehead and create space for the compressed brain to expand and grow.

Within 6 months after the surgery, Anish demonstrated a lot of improvement in attaining the milestones. His long-term prognosis is excellent, and he is likely to grow and develop as a normal child.

TSUMA

SUMA

Suma is a 10 year old girl who presented to us with a condition called Cruzon's Syndrome, Cruzon's is a condition with multiple craniosynostosis (premature fusion of the sutures in the skull which does not allow the face and brain to grow normally), as a result of this she had developed severe hypoplasiaof the skull and midface leading to protrusion of the eyeball out of the socket (Exorbitism).

Prior to her surgery, Suma was unable to close her eyes, which led to frequent redness and infection.

As her mid face was severely deficient, she had excessive snoring and was unable to breathe normally, which therefore led to frequent episodes of disturbed sleep.

Due to the compression of her brain, Suma was a shy and an introvert child, slow in her responses with her day to day activities including her fine motor skills.

Today she is active, confident and esthetically pleasant to look at.

The Future

There is still a great need to continue delivering treatment to these complex deformities affecting children in India. Inga Health Foundation the only Indian NGO, which financially supports and surgically treats these rare and difficult complex deformities. A large list of patients of such nature are awaiting surgery. If left untreated, such children rarely survive to see a normal adult life.

These are some of the examples of the kind of children who have been referred to us for surgery, by the Government of Karnataka, through the RBSK program. We are currently in the process of evaluating these patients, with detailed investigations and then plan for final surgery.