The Texas Children’s Hospital recently started a campaign to raise awareness of children’s palliative care programs in the Neonatal Intensive Care Units. Dr Karen Johnson, who is a neonatologist, wrote a beautifully moving letter to the parents of the babies she treats.
“As a neonatologist, I care for the sickest babies in the hospital,” says Dr Johnson. “This is a letter to the parents that no one wants to talk about. The parents that never get to send out birth announcements. The parents that never get that first smile or first step. The parents that say goodbye when they should be saying hello. I wrote this letter for you. It all starts when you find out you’re going to have a child. You’re going to be a mom! You’re going to be a dad! You make that first doctor’s appointment and all you can dream about is that first sonogram and hearing that first heartbeat. You wonder who your child will look like and what their personality will be like. You never imagine that you will never know.”
Dr Johnson continues to relate every parent’s worst nightmare, “then you get a phone call that brings you to your knees. You hold on to the hope that maybe the tests are wrong. That hope gets you through the myriad of consults with genetics counsellors, maternal fetal medicine specialists, cardiologists, neurologists and surgeons. Hope that you continue to cling to, hoping beyond hope, that just maybe these tests will prove that your baby is healthy.”
In her letter Dr Johnson reassures parents of the doctors and multi-disciplinary team’s commitment to ensuring that their child is comfortable and the family is together from the child’s first breathe to their last. “We honour your roles as parents, the role this new child holds in your family, for however short or long and as you say goodbye to your precious little one, we hope you remember that you honoured this new life and that legacy of love will live on,” says Dr Johnson.
Dr Johnson is a member of the Perinatal Paediatric Advanced Care Team (PPACT) for Texas Children’s Hospital’s Fetal and Newborn Centre’s, she is also an associate professor of paediatrics in the section of Neonatology at the Baylor College of Medicine. To read Dr Johnson’s full letter, click here.