Parenting a medically complex child is a complicated task! Not even the best of us can navigate it on our own – and this where having a competent medical team can be such an asset! But as you know, there is no standard of care around weaning from a feeding tube that is no longer medically necessary, so approaching the topic with your team might feel overwhelmingly complicated. So if you’re in that boat, I have a few ideas that might help:
Remember you both share the same goals of providing great care to your child, and keeping them safe and healthy.
Also remember that as a parent, the ultimate responsibility and decision-making rests with you: you are the captain of the ship.
Find a co-pilot: One of the best things for you and your child is to find one member of your medical team whose opinion, insights, and way of looking at a problem you respect and trust. Having a point person who can talk “doc to doc” with other providers who come in and out of your child’s life, who knows you and your child, is a tremendous asset when there are conflicts or differences of opinion.
Get second (or third) opinions: In the back of your mind, know that medical opinion, skill, ability to communicate, vary from one person to the next. Asking questions is ok. Getting a second opinion is ok. As one physician told me many years ago, “Half of what we tell you will be wrong in five years, and the other half we pull out of thin air.”
Challenge protocol: Medicine is practiced in a system, and in institutions with their own ways of doing things. How something is done can vary widely from one hospital to the next. When you are told, “That’s how things are done,” remember it also means “That’s how we do it here.” Firmly but politely pushing back can open doors of flexibility: “We don’t actually have to do things this way.”
Compromise: When presented with a request that seems unreasonable, suggest a middle way. Remember your team also cares about your child, but there is flexibility in medicine.
For example: If your team suggests weekly weight checks in clinic, suggest monthly or bi-weekly visits, or checks at home. State why you are offering an alternative: Hard to travel, risk of infections, you would not act on that information anyway, etc.
Use access judiciously: If your favorite provider has given you their email or direct phone line, use it when you can’t get the answer elsewhere or when things are urgent. This helps create trust – when you call, your provider knows to pay attention.
Ask questions: Write them down before a visit or before rounds. This helps to make sure you get the answers you need, when visits tend to be over so quickly.
Don’t forget that the role of nurturing your child belongs to YOU. If you see interventions, such as therapies, that strike you as wrong or harmful, it is well within your right to stop such behavior.
Walk confidently, trust your parent sense, and find the experts who genuinely care for you and your child. In complex situations, find the people who have seen the most cases of your child’s particular issue (numbers matter!), and be willing to overlook the bedside manner of surgeons. J Remind your team that what is a day at work for them, for you concerns the most precious gift in your life: your child. You are not crazy; you are in a crazy situation
Olga Owens, JD, Lead Parent Coach