"The term palliative care often is perceived by some of my colleagues and some parents as giving up hope or working with the death-and-dying squad. What they may not understand is that clearly using palliative care means that kids actually live longer and better," Dr Stefan Friedrichsdorf.
Kali's Story proves that children's palliative care can actually save lives that would have been otherwise shortened and demonstrates the importance of continuity of care throughout the lifetimes of children living with life-shortening illnesses.
Kali was born prematurely at 23 weeks of gestation. As she was growing in the neonatal intensive care unit (NICU), her lungs weren't and despite being ventilated she began gasping for every breath. In their distress, Kali's parents accepted a referral to Dr Friedrichsdorf's pain and palliative care team. To their surprise, the interventions of the team not only treated Kali's pain but also facilitated dramatic improvement to the point where Kali qualified for life-saving lung transplant surgery. Importantly, Kali's breathlessness and pain was successfully treated with morphine, an essential pain medicine.
"As we've grown to know you and your team you've provided so much support for her and for us as parents," Janice Eason, Kali's mother.
BEYOND THE NICU
Now, seven years later, Kali is developing well and living a relatively normal childhood. She continues to receive specialist palliative care services enabling her to spend as much time at home as possible with the best quality of life.
"We're thrilled to have that continuation of care for in the NICU to age seven,"Janice Eason, Kali's mother.
Beyond the NICU featuring Dr Stefan Friedrichsdorf.
Filmed in Minneapolis,USA. Deep thanks to Dr Stefan Friedrichsdorf and Children's Hospitals and Clinics of Minnesota.
Please consider supporting the life-changing work of Children's Hospitals and Clinics of Minnesota.
MARMADUKE’S STORY – COMING SOON – FEBRUARY 4 2015
“When you realize how uncertain life is , you do begin to appreciate the value or family and friendships and enjoy those moments while you have them because you don’t know what’s around the corner,” Simon Waring.
Marmaduke’s Story highlights the importance of holistic care for all members of families containing children living with potentially life-limiting illnesses. We hear the first hand account of family members reflecting on the importance of children’s palliative care, including home-based care and effective pain control for childhood cancer patient Marmaduke from Melbourne, Australia. Read more…
ROYAL PALLIATIVE CARE ADVOCACY -COMING SOON FEB 18TH 2015
“Just the sheer fact that someone as high profile as HRH Raja Zarith or HRH The Duchess of Cambridge are both serious and passionate about this movement automatically makes it a subject worth discussing.” Gail Featherstone, Wife of the Former British High Commissioner to Malaysia.
So much more than end-of-life care
Guest Blog by Janice Eason
Kali would not be here today if it would not have been for the help of her pain and palliative care team. They have been with her since the beginning and are still a part of her life today. The work they do is so much more than end of life care which is what I originally thought when I first met Dr. F.
Hope for the Best, Prepare for the Worst
Guest Blog by Dr Stefan Friedrichsdorf
Pediatric Palliative Care is making sure that children facing a serious illness can live as long as possible, as well possible. While we hope for the best, we prepare for the worst.