No one plans to have a child who needs a medical team, so it isn’t a process that many people are prepared for. Even for parents who have advance knowledge that there might be some health issues after their child’s birth, the actual process of walking through the healthcare system can be more exhausting and frustrating than it should be.  Here are a few reminders that may help you navigate your way. 

1. Most healthcare providers and institutions mean well, even if they don’t align with your expectations and needs.   However, they all have their own guidelines and training that shapes their view of your child and his or her situation.  Looking at the situation from their perspective and considering their values may help you determine the best way to proceed in creating an alliance. 
2. Don’t assume that institutions and providers have access to all the information.  On-line medical records can be helpful, but HIPPA guidelines and heavy caseloads sometimes prevent people and places from sharing information, especially once you are outside of the hospital environment.   Keep a binder or electronic copy of records handy for all hospital visits. 
3. Assume the role as team leader as soon as you can.  During a crisis, a doctor may be the most appropriate person to head up the team for making decisions that require specialty knowledge.  Remember that you always have a role on the team, and that you should become a leader of that team as soon as you can.  Asking questions until you understand all the explanations and options is OK and will help you feel more comfortable with making decisions as your child matures. 
4. Find a pediatrician (or primary care doctor) who suits your needs.  In complex medical cases, there may always be a need for informed medical advice.  Some pediatricians defer to specialists to make many of the decisions and take a sideline role.  Others feel more comfortable making decisions and refer to specialists only as needed. Remember that they are here to help, and you need to be able to work as a team. 
5. Working with specialists.  We are fortunate in many areas of the country to have specialists who can provide exceptional care for very focused needs.  For this reason, they can become experts in that area.  However, they are NOT necessarily experts in your child.  YOU are!  Although you are likely to have fewer choices in specialty providers, there are ways to work with providers whose goals differ from yours when it comes to your child’s treatments. 

If you missed this week’s episode of the Tube to Table podcast about how to start the conversation with your doctor, check it out here!