Ethan was born in the spring of 2008 with a congenital heart defect. At just 10 days old he underwent a major lifesaving surgery that complicated and left him brain damaged. Ethan’s prognosis looked poor, he had limited brain function and would be kept alive by ventilators. Dr Stefan Friedrichsdorf, along with his interdisciplinary team were invited to meet Ethan and his family.
Dr Stefan Friedrichsdorf is the medical director of the Department of Pain Medicine, Palliative Care and Integrative Medicine at Children’s Hospitals and Clinics in Minnesota. He lectures extensively nationally and internationally about paediatric pain medicine, palliative care and integrative medicine and has a record of publications in the field. He is course director of the annual week long Pediatric Pain Master Class.
“Given what Ethan is up against, what are you hoping for?” was the very important question posed by Dr Friedrichsdorf to Ethan’s family. Ethan’s family didn’t want him to suffer or be on a ventilator for the rest of his short life. With the help of medications for pain and shortness of breath, Dr Friedrichsdorf and his team were able to remove Ethan’s breathing tube whilst keeping him comfortable and not too sleepy. Ethan beat the odds and his family were ready to take him home two days later. With the help of the palliative care team, Ethan’s family learned how to care for him and keep him comfortable through massage therapy and administering comfort medications.
Ethan enjoyed his short four months with his family before taking his last breath at the Minnehaha Falls in his mother’s arms. Dr Friedrichsdorf said, “we cannot always save children from death, but we can do a better job of helping children and their families to live well: to save them from needless anxiety, pain and suffering. At the very least, we must be able to look our patients and their loved ones in the eye and promise them that we will do our absolute best to manage distressing symptoms, ensure the best quality of life and take care of them.” To read the full article, click here.