Our Crash Landing
Crash landings happen everyday in the medical world. You just hope you have a Captain Sully on your team. For the major illnesses, you most likely will. But, what about rare disease?
The Takeoff
January 15, 2009. US Airways Flight 1549’s Captain Sully instructs his passengers to brace for impact as they will be landing IN the Hudson River. Imagine the thoughts consuming every soul on that aircraft. Will I survive? Why didn’t I miss this flight? Why THIS flight? Will I drown? Will the plane explode? I hope my family & friends know I love them so much!
You know the happy ending to this story. Captain sully miraculously landed this giant aircraft safely on the Hudson River where boaters then heroically responded and rescued every life onboard.
A Drop in Altitude
Similar thoughts went through our heads on December 21, 2017. This is the day our 3rd and final son was born. As soon as Hudson was born, something was different. But, how? All of Hudson’s prenatal scans had been considered normal. Low muscle tone, a cleft palate and medical terms we couldn’t pronounce were being thrown around by NICU nurses who had hustled in. This was the first time “Genetic syndrome” was mentioned.
How would we survive this? Why us? Why him? How will our lives ever be the same again? Will Hudson ever know his own name. Will he ever recognize us as his parents? Will he ever smile? Laugh? Play? Walk? Talk? Feed himself? Far different than the hopes and dreams you wonder when your “healthy” children are born.
Our “Sully” Takes Over
The miracle in this story was our Captain. Her name is Susan. A perfect stranger for only seconds. She rose from stranger to family as fast as Flight 1549 descended onto the river. Susan was our “nurse navigator” at Children’s National Hospital in Washington, DC. She was the first to greet us the morning we entered the intimidating confines of a Children’s Hospital. Intimidating because your infant was in need of such care in the first place.
Susan checked us into appointments; challenged doctors in a respectful but necessary way; coordinated specialists (we had 14 at our height) appointments to be all during one day; translated doctor speak into a language that a School teacher and investment manager could understand; and explained to one doctor what another had said, just to name a few. In short, Susan gave us an informed voice in an overwhelmingly informed room. She served as an emotional counselor to us, as we grieved.
Susan advocated for Hudson as if he were born to her. A deep seeded desire to ensure others feel comforted, supported, empowered, and guided by their own nurse navigator became our family mission.
A Return to the Skies
Our goal for Miracle of the Hudson is to ensure that all rare disease babies and their family have access to a nurse navigator who’s only concern is the best possible outcome for the patient while improving the overall experience that the parents and family.
No one ever plans to have a special needs, complex care child, or child battling rare disease.
A Miracle of the Hudson (MOH) Rare Disease Medical Advocate (RDMA) has the empathy and emotional intelligence to meet you where you are. They have the medical experience and knowledge to help guide you and introduce you to the doctors you need in your corner. They have the passion to internalize your loved ones issues as their own. They have the super power to provide hope in an otherwise hopeless moment!
MOH RDMA’s will help you navigate your crash landing so that you have the greatest chance to survive and thrive as possible. We know this, because we are built by patients for patients!
