Today, I spent time with the family of Mr. Ameet and Mrs. Vijaylakshmi, whose twins have been in the ICU for three months since birth. Their newborn twins have been diagnosed with CCHS (Congenital Central Hypoventilation Syndrome), a rare genetic disorder affecting breathing. They require lifelong ventilation support and an extended stay in the ICU till they stabilize.

We discussed for hours the various challenges involved in maintaining two babies at home in the future. It takes real strength and patience to care for them, creating an environment akin to ICU conditions at home. Financial needs are substantial, requiring monthly support. Challenges include securing trained nurses, obtaining medical consumables, and handling emergencies and hospitalizations – a truly tough time. Despite this, the parents are positive and eager to save and care for their loved ones.

My wife and I shared our 24 years of experience in managing our daughter Nidhi, offering insights into do’s and don’ts. Managing one child with high medical dependency has been a lifetime commitment; one can only imagine the challenges of supporting small kids in a similar situation. It’s a situation one cannot even imagine; It makes you ponder on the complexities of life.

Unfortunately, there are no government schemes to support such critical needs. There is a pressing need for higher advocacy and suitable government policies to care for children with such conditions in India. It’s disheartening to witness policymakers prioritizing their political existence, engaging in disputes without showing concern for citizens.

The family is currently raising funds for immediate hospitalization and the lifelong management of their children. My heartfelt admiration goes to all mothers who care for babies with special needs and high medical requirements. Their resilience and strength deserve immense respect.