After navigating through two of my own medically complex pregnancies, I feel an obligation to help others find their feet along the way. With both of my babies, I had gestational diabetes that required insulin. Now, gestational diabetes can create a host of issues for the baby and the expectant mother. In moms, it can cause ketoacidosis - a dangerous and potentially fatal condition in which sky-high blood sugars cause organ failure. Your blood can become poisonous to your body, literally. Having gestational diabetes also means you have a 50% chance of developing Type II diabetes later on.
In babies, gestational diabetes can put a strain on the pancreas. Once the baby is born, that pancreas might have trouble adjusting to a body that isn’t running high on glucose, and can create dangerously low blood sugars. Low blood sugar is just as much a problem as high, so sometimes these babies have to stay in the NICU for a few days to make sure they don’t have a dangerous episode of hypoglycemia. It can also cause the baby to gain excessive weight in utero, creating a potential for shoulder dystocia. Shoulder dystocia can be dangerous during labor, sometimes requiring a c-section to resolve.
All that to say: even a well-managed and early-detected case of a fairly common pregnancy complication can have lasting effects. Labor might not be the end of medical complexities. Instead, it might be just the beginning. Luckily for my kids, none of us have had these issues due to my gestational diabetes. But I do know many mothers who have had stressful pregnancies and that stress didn’t end with delivery. In some ways, it had just begun. Some of these mothers have taught me a few tips that helped them. Hopefully, you’re never in a position where you have to manage the care of a child with medical issues. But if you are, these points are a good place to start.
Write Everything Down
Yes, write it down! If your child is seeing a (or multiple) specialists, soon enough your head will be spinning with all of the details and information thrown your way. It’s a bit like trying to drink from a firehose, and you’re surely already emotionally charged. Unfortunately, even if you’re distracted by your thoughts, your child needs you to keep track of all the finer points. Sometimes specialists don’t consider interactions between treatments, or miss the “whole picture” that can better inform a course of care. Having all of this information in one place, with loads of room for notes, is beyond valuable. One friend has made binders - perfectly organized and labeled, no less - that she distributes to each new specialist. They contain all relevant medical records and notes, doctor contact information, insurance details, and more! This level of diligence has earned her a respected reputation among the doctors that work with her daughter.
Advocate, Advocate, Advocate!
Now that you have lots of great notes and are sure not to miss a single detail, put that information to work! Ask questions, even if you think they’re stupid. My favorite is this, “I want to make sure I understand this. What I’m hearing is (insert information). Is that correct?” Ask about the benefits and risks of any proposed course of treatment. Any potential interactions with other treatments. If you’re not feeling at ease, ask about alternatives. If you still don’t feel at ease, ask for a second opinion! It is YOUR job to make sure you and your child get the care that you deserve. Done respectfully, this kind of advocacy can create long-lasting cooperative partnerships between patient and provider.
Yes, this means YOU! Your child may need lots of attention and care, but no one can pour out sustenance from an empty cup. This habit of self-care can take many forms (and yes, it must become a habit!); massages, pedicures, retail therapy, new books, time to work out, an hour of silence every day, etc. Whatever makes you feel refreshed, renewed, and soothed - do that! Make the time and ask for help. No mom is an island and no one can work endlessly without ceasing. Take care of yourself, mama!
My hope is that this advice from mothers who have “been there” helps you feel more confident as your child’s caregiver and advocate. Of course, I wish more than anything that all moms and babies could have perfect health. But when things go not-according-to-plan, you have my support, and the support of the whole BabyGaga family.
Have you ever dealt with a complex pregnancy that resulted in medical issues for your or your child? What did you learn that could help other moms? Share your wisdom with me on Twitter @pi3sugarpi3. I’ll be happy to pass it along!