VAAG helped ventilator-dependent craniovertebral anomalies and children at AIIMS, New Delhi by funding their treatment.
Craniovertebral junction disorders are abnormalities in the bones and joints that connect the skull to the spinal column. There are many different types of CVJ disorders including atlantoaxial dislocation, basilar invagination, and odontoid hypoplasia. These conditions often occur together and cause symptoms such as neck pain, headaches, dizziness, and loss of balance.
Some people who are sick need help to breathe using a machine. These people often have to stay in the hospital for a long time, even though they could go home if they had a machine to help them breathe at home. However, these machines are very expensive, and most people who need them can’t afford them.
Three patients who were admitted to the Department of Neurosurgery and discharged on HMV (Home Made Ventilator) after remaining on ventilator support for a prolonged period in the hospital. Patients were discharged with two AgVa home ventilators (one as a standby unit), one Ambu bag, one pulse oximeter, and one backup power supply unit capable of providing power to the ventilator for at least 24 hours.
All the equipment was given free-of-cost through donations by the hospital staff and other donors. We followed up with all patients telephonically from their homes to detect complications, ventilator malfunctions, and additional costs associated with HMV.
| Age/Sex | Diagnosis | Hospital stay | Ventilator mode | |
|---|---|---|---|---|
| Patient 1 | 13/M | CVJ anomaly | 58 mo | PSV |
| Patient 2 | 14/M | CVJ anomaly | 13 mo | PSV |
| Patient 3 | 17/F | Cervicomedullary tumor | 50 mo | PSV |
Abbreviations: CVJ, craniovertebral junction; F, female; HMV, home mechanical ventilation; M, male; mo, months; PSV, pressure support ventilation. Source: NCBI
Case story 1
A boy approx 13 year old with a problem in his neck was very weak in his arms and legs. He had surgery to try to fix the problem, but it didn’t work and he had to have a tube put in his throat so he could breathe. He had more surgery, but it still didn’t help and he is still very weak. In 2018, the boy was put on a special ventilator at home and given less and less oxygen over time. After 5 years, he was able to go home and use a different ventilator on room air. He has been doing well for 7 months.
Case story 2
A 14-year-old boy was admitted to the hospital in March 2018 with weakness in all four limbs and difficulty breathing. He had surgery 3 years ago to fix a problem with his neck, but it did not help. The doctors put him on a machine to help him breathe and did more surgery to fix his neck. After the surgery, he could not breathe on his own and needed a tube to help him breathe. In January 2019, the boy was put on a machine that helped him breathe at home, and over the next few months, the machine gradually gave him less and less help with his breathing. His parents were also given information about another machine that they could use at home, and they were trained on how to use it. After a year of being in the hospital, the boy was able to go home in April 2019 and use the other machine. He has been doing well for the past 5 months and has not had any problems with his breathing.
Case story 3
A 17- year old girl went to the hospital because she couldn’t move her arms and legs very well. The doctors found a tumor in her neck and removed it. After the surgery, she could breathe on her own and went home. But one month later, she had to go back to the hospital because she couldn’t breathe without help. In 2019, she was able to go home with a machine that helped her breathe. This girl was in the hospital for four years before she was able to go home with a machine that helps her breathe. She is doing well now and has not had any problems with her breathing since she left the hospital.
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