Children's hospitals are a popular cause to support, whether it's rounding up your change at the grocery store or writing a six figure check. (Or a pro-athlete photo op? But I digress.) If you're anything like I was six years ago -- meaning, someone who never had a reason to spend time in a children's hospital - you have a generally warm and fuzzy feeling about children's hospitals, but probably have never stopped to think about why they exist, or what benefit they provide that is any different from a regular hospital. So for those who are curious, I am writing a top 5 post about the benefits of a children's hospital from the perspective of a special needs parent:
1. Expertise - Joshua's two main diagnoses (4q deletion syndrome and Pierre Robin Sequence) are extremely rare - when we tell them to residents or new doctors, the docs often whip out their Smart phones to give themselves a quick refresher. For kids with rare conditions or complicated health needs, it is better to be at the place that is a magnet (often for hundreds of miles around) for other kids with these same complicated health needs, because then the doctors will have a much better idea of what's going on and what to do for you. When Josh was born, the Reno docs decided to fly Josh 500 miles away to a children's hospital for this very reason. On vacation, when we have occasion to visit an ER or Urgent Care, they almost always ask me why I didn't just take him to the Children's hospital - even when there isn't a children's hospital in the same town. Both parents and doctors feel better having medically complex kids cared for by pediatric experts, and these docs are usually housed at children's hospitals.
2. Electonic Doctor note sharing / Teams - When your child has multiple specialist doctors, it really helps if they can see each other's notes and talk face to face about the best way to handle a situation. For example, it was helpful to have our ENT (who interpreted sleep study results) talk directly to the craniofacial surgeon (who repaired Josh's cleft palate) about how the palate repair would affect Josh's ability to breathe. It was helpful when multiple surgeries needed to be done around the same time and the doctors could coordinate so we just had one anesthesia and one hospitalization. When your child's pediatric specialists are not affiliated with a children's hospital, then they often rely on the parents to communicate what's going on with the child - and while special needs parents often become extremely knowledgeable about their child's condition and do an adequate job of filling the different doctors in on developments, we just can't communicate things the same way as two doctors talking directly to each other.
3. Decor / Child Life - For Josh, it makes a huge, positive difference in his anxiety level when as much as possible of the hospital sensory experience is designed to be child friendly and soothing. When the lobby is decorated in child friendly colors, there are cartoon animals painted on the walls in the exam room, there are volunteers playing live music out in the corridor, and there is a train table in the pre-op waiting room. When the TVs for admitted patients have multiple cartoon channels and the Child Life department has extensive toys and books available for kids of all ages and abilities. Similarly, it makes a big difference when doctors are willing to take a minute to help make the kid comfortable - introduce themself, let them touch the stethoscope, explain what will happen next - before they dive into the exam. And it seems like prioritizing the comfort of the kid over absolute maximum efficiency happens more often at children's hospitals than elsewhere.
4. Convenience - Josh currently sees 7 doctors at least once per year (for those who are wondering: ophthalmologist, neurologist, ENT, plastic surgeon, GI, pulmonologist, and pediatrician), and a few others from time to time as things come up (geneticist, orthopedist, dermatologist, urologist, developmental pediatrician, and pediatric surgeon). This means we're going to the doctor dozens of times per year just for well checks. If all the doctors are housed under the same roof of a children's hospital, I learn pretty quickly where I'm going and how long it will take to get there and what the parking situation is and how long to expect to wait and whether they have a coffee shop, etc. If the practices are scattered all over town with different staffs and situations in each place, I have to spend a lot of extra time figuring out logistics and leaving buffer time (in case this is the office that runs right on time rather than consistenly an hour behind).
5. Billing - That long list of doctors above means we run up a bill pretty quickly each time our health insurance year starts over, and children's hospitals do two things that are extremely helpful with this. First, they consolidate all the expenses into two big bills - one from the hospital itself and one from the doctor's group - this simplifies (see #4) and it also gives them a good picture of your overall health expenses. Second, they provide extremely generous, zero interest payment plans as you pay back this consolidated bill. They are not non-profit in name only - they really do prioritize caring for kids and they don't want financial hardship to be a barrier to kids getting the care they need. (At least that has been our experience with CHKD in Virginia.)
Those are my top 5. I recognize that some of these are more compelling than others -- the expertise thing matters a whole lot more than the convenience thing -- but at the end of the day, they all matter, so they all make the list. Friends, what would you add?
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