Actor Celina Jaitly recently shared her deeply emotional experience of motherhood and loss through an Instagram post that resonated with countless parents who have faced similar struggles.
Accompanied by a photo of herself and her son Arthur at the gravesite of Shamsher, who would have been Arthur’s twin, she wrote, “I wished I could save him… but I couldn’t.” Celina recalled learning of Shamsher’s diagnosis, hypoplastic left heart syndrome (HLHS), during her second twin pregnancy, just months after losing her father. Despite seeking advice from top doctors across Dubai, London, and India, she revealed that Shamsher’s condition was incurable.
Reflecting on that period, Celina described the anguish of feeling helpless as a parent: “We endured the pregnancy in pain & prayer, hoping for a miracle… I wished there were medicines I could take… but there was nothing.” Yet, within her grief, she also acknowledged hope: “God did not leave us empty-handed. I often think what life would have been had Shamsher survived. Seeing the older twins’ camaraderie, I feel Arthur misses that deeply.” She spoke about how Shamsher’s absence still echoes in Arthur’s life, and how her other children play a role in comforting their youngest brother.
To better understand what families navigating such conditions go through, we asked experts to address some crucial questions.
What exactly is hypoplastic left heart syndrome (HLHS), and what are the current treatment options available for newborns diagnosed with it?
Dr CM Nagesh, general secretary, Indian College of Cardiology, tells indianexpress.com, “Hypoplastic left heart syndrome, or HLHS, is a rare and severe congenital heart defect in which the left side of the heart, including the left ventricle, mitral valve, aortic valve, and ascending aorta, is underdeveloped. Because the left side of the heart is responsible for pumping oxygenated blood to the entire body, babies born with HLHS cannot sustain circulation on their own without immediate medical intervention.”
Treatment for HLHS has advanced significantly in recent decades, he adds, stating, “The main approaches include staged surgical reconstruction, beginning with the Norwood procedure in the first days of life, followed by subsequent surgeries like the Glenn and Fontan procedures as the child grows.” In some cases, heart transplantation is also considered, especially when the anatomy or condition of the baby makes surgical reconstruction less viable. Along with these treatments, newborns are often started on special medications and prostaglandin infusion immediately after birth to maintain blood flow until surgery is possible.
How can expecting parents cope emotionally when they learn their child may not survive?
Neha Cadabam, senior psychologist and executive director at Cadabams Hospitals, says, “When parents receive such news, it often feels like the ground has shifted beneath them. The most important step is to acknowledge that their feelings of guilt or helplessness are natural but not a reflection of their role as parents. Creating space to talk openly with medical professionals, mental health experts, and trusted loved ones can provide emotional grounding.”
Some ways parents can support surviving children while processing their own grief
Surviving children may sometimes feel overlooked or carry confusion about the loss, Cadabam stresses, so it becomes essential to include them in the grieving process in age-appropriate ways. “Parents can encourage siblings to express their emotions through drawing, storytelling, or simply sharing memories of their brother or sister. Maintaining routines provides a sense of safety when life feels uncertain, and small acts of reassurance go a long way in helping children feel secure. Parents need not have all the answers; what matters most is creating an environment where open conversation is welcomed and emotions are validated.”
