It's hard to believe that we've been dealing with Em and all the medical trials that come a long with her and her diagnosis for two years now. It started when I was pregnant and we had that twenty week ultrasound, and here we are still learning and navigating our way through the healthcare system. It's hard, expensive, stressful, and draining. I feel like we're at a really good spot with Em now where her health is really stable, and we've been checked out by every specialist on the map, and so we're hoping our lives will become less expensive, and easier from here, but I'm thinking that might be wishful thinking. If you're just starting out on your own medical journey with your child, here are some things I wish I knew from the beginning.
1. You must have a good relationship with your pediatrician. This will be the most important thing ever. We've had a lot of lousy pediatricians in our 3 1/2 years of parenting. Including the one we had when Em was born and he told us to our face that he was going to have to go home and google Em's diagnosis because he didn't know what it was. Our pediatrician that we have here in Atlanta though is nothing short of amazing. She respects everything I say, doesn't belittle me or my opinions, and genuinely wants what's best for Em, and will fight for her to get her into doctors. Your pediatrician is going to be the doctor that is going to get you into specialists, tell you which tests and procedures your child needs, and they'll be the one getting you into the therapies your child may need as well. If you and your pediatrician don't have a good relationship, consider switching. I love this article: 5 Reasons to Switch Pediatricians.
2. University Hospitals vs. City/Community Based Options: When we were in North Carolina all of Em's doctors were through Duke, and while we're grateful for the doctors who helped us, we quickly learned that everyone was interested in her from a research stand point and it was more about what Em could do for them instead of what they could do for Em. We constantly had offers to be a part of various research opportunities for people's Fellowships that we weren't interested in. Some people might be, and that's fine, but if you don't want that option, try looking for doctors at non-university based hospitals.
3. Do your homework: Most hospital and medical systems are all large networks. All of our doctors are through Children's Healthcare of Atlanta and because of that, all of our doctors are contracted to refer us to doctors within that network. CHOA is such a large and popular name here, and because of that there is a ton of overhead costs for everything. Meaning the organization makes money off of charging you astronomical amounts for medical procedures that wouldn't cost nearly as much else where. We were quoted $4,000 for leg braces for Em through CHOA, and after insurance we would have had to pay $800. While that doesn't seem like a lot, when added into all our other bills, it really is more than we have. When I was discussing this with our therapist she said, "I'm not supposed to tell you this but there is another place down the street that does them significantly cheaper", I got my new quote last Friday and our total amount will be $237. That right there is manageable. Don't be afraid to do your own research for things and if you feel like it's too much money, look elsewhere. Chances are there are other options your medical network doesn't want to tell you about.
4. Prioritize needs: Em's biggest need is physical therapy, so we don't really mind paying a little bit more money each year to have her go to one of the best physical therapist in our area. However, her needs for speech and occupational therapy aren't as pressing (especially since she communicates pretty well with us), so while we are looking into starting speech therapy, we're fine with going through the public school district and getting those services for free since the need isn't as great. If you can't afford any sort of therapy though, all school districts and counties have community based programs you can tap into, even for infants.
5. Know your insurance plan: This has been huge for us. We hit our deductible every year, but then we have coinsurance, and out of pocket maximums, per person, and as a family as a whole, knowing how all of this works for your family at the beginning of the year will help you to know what you can expect to pay each year. Also know which doctors are covered in your network, and what procedures your plans will cover. Don't be afraid to fight with insurance and appeal something if you believe it should be covered.
6. Find support groups: This is another thing that is awesome. On Facebook there are support groups for basically any kind of illness, injury, disease, etc... that your child might have. Those moms in those groups are warriors and have most likely been through everything you're going through. I can't tell you how many times Em did something weird in the middle of the night when she was born and I just hopped online and was able to ask other moms if something was normal or not. Being able to connect with moms who are going through the same thing as you will be so important for you to not feel isolated within your diagnosis. It's hard when you feel like no one knows what you're going through, but those moms will.
Those are all the tips I have for navigating healthcare with your child and their specific medical needs. Let me know what tips you have and if there is anything I missed in the comments below!