Who Are We?
Tour Guides for Holland was founded by parents Amanda & Jessica after the birth of their daughter, Alexa. Alexa was born with a brain injury after she went without oxygen during delivery. They were suddenly thrust into a world of medical jargon and life or death decisions that they were completely unprepared for, with no one to help them understand what was going on or assist them in learning what they could about their daughter's diagnoses, or even direct them to online and community resources for support. They felt completely alone, and although they had previous research experience they could rely on to educate themselves medically, finding resources and support was much harder. After their daughter was discharged from the hospital, it became even more isolating as none of their friends, or even therapists, knew how to support them or what resources were available.
Helping others and teaching have always been a calling for them both. As they thought about all the families who similarly had little to no support, and even less of an academic background to prepare them for the huge amount of research necessary to make the kinds of medical decisions that become necessary when you have a child with complex medical needs, they decided they didn't want any other family to go through what they had gone through, alone.
Tour Guides for Holland's central principle is parents helping parents. We use a mentoring and coaching model to help you learn how to research your child's specific diagnoses, learn what questions to ask their doctors, and help you locate online and community resources for you and your child(ren). We will help you learn your rights and responsibilities in the hospital, the layout of the hospital so you can locate resources, and provide you with a list of hospital-provided services (ie. Ronald McDonald room, hospital library, chapel, etc). Furthermore, we offer basic assistance for the duration of your NICU stay- picking up and dropping off things you've forgotten at home, organizing meal trains and delivering meals, bringing snacks (especially non-diet soda!) or simply sitting with your child so you can get 5 minutes of fresh air.
Although our primary experience is with Hypoxic Ischemic Encephalopathy (HIE), we are not a diagnosis specific organization. We support the parents of children with all diagnoses and prognoses.