On the sixth day, the doctors told Mandeep and Inder they wanted to meet with them both in-person to discuss Dev's condition. Due to COVID-19 restrictions, Mandeep still hadn't been to the children's hospital, so she was surprised to see so many doctors when they walked into the meeting. After introductions, the head of the complex care team told them that Dev had a rare genetic disorder called Generalized Arterial Calcification of Infancy, or GACI. The doctor explained that the condition causes calcium buildup in the blood vessels. Mandeep and Inder still recall the exact words the doctor said to them next, "Unfortunately, the condition your son has is incompatible with life."
Hearing these words, Mandeep felt so devastated she couldn’t breathe and needed to rip off her mask to gasp for air. After several minutes, she asked the doctor how much longer Dev had to live. The doctor replied that she didn't know – maybe days, weeks perhaps, but most infants with GACI do not survive beyond six months. Inder says that after hearing this diagnosis, everything else was a blur. They simply could not process any more information.
Later, they read the notes that a social worker took during the meeting and learned that GACI is an autosomal recessive condition. This means that babies with GACI have inherited two defective genes, one from each unaffected carrier parent. Dev had GACI Type 1, also known as ENPP1 Deficiency, caused by a mutation in his ENPP1 gene. This genetic deficiency results in low levels of pyrophosphate, a metabolite that regulates calcification in the body. Without this proper regulation, calcium can build up in the walls of the blood vessels, restricting blood flow and damaging multiple body systems. One thing they saw in the social worker’s notes gave them a glimmer of hope: infants with GACI who make it to six months stand a better chance of survival. So, Mandeep and Inder became laser-focused on getting Dev past that six-month milestone. On the advice of their doctor they connected with GACI Global, an advocacy group, and found support, answers to their questions, connection with other families affected by GACI, and tips for advocating for Dev’s medical care.
The first big test was successfully taking Dev off intubation. The risks were high; it was a very real possibility that Dev would go into cardiac arrest. Dev surprised everyone, though. He survived and responded well to his medical treatments: infusions of sodium bisphosphonate, which reduce calcium buildup. Over the next 15 days, Dev's blood pressure decreased, and he began to eat more and gain weight. Mandeep and Inder could hold and cuddle him now. As Dev grew stronger, doctors allowed one parent at a time to take him for stroller rides around the hospital.
Next, the doctors allowed Dev an extra-special visitor: his older brother, Sarvin, who was 17-months old when he met his brother. There was an immediate connection between the two; it was a beautiful moment that the family was able to capture on film. Weeks later, the family was overjoyed when the lead doctor told them Dev was well enough to go home with them.