Skip to main content

Talk To Your Doctors

If your daughter (or son) is approaching 18 years old, there are a couple of matters that you must handle. While most people know that when our children turn 18 years of age, they are no longer ours, but they are their own person. For me, that meant working with my attorney to be appointed as my daughter’s legal guardian - her guardian advocate here in Florida. Not difficult to do, but imperative that it be done.

What no one told me was that you also need to talk to your child’s doctors. And you need to do it before you have a medical emergency. Let me explain. My daughter had Rett Syndrome. She was 19 and usually very healthy. It took a lot to get her sick, but when she was, we usually ended up in the ICU. The culprit was usually pneumonia. The left lung most of the time - sometimes both. For 10 years we went to a children’s hospital - that’s where we were in the ICU no fewer than 4 times. That’s where her rods were put in to straighten out her spine. So, the last time she was sick, I loaded her up and took her to the children’s hospital. We checked in and went to a room to start the process of determining how bad it was.

Well, very shortly after arriving in the room, the nurse came in and told us we were being transferred to the regular big-people’s hospital a couple of blocks over. I didn’t understand. My daughter, although 19 + years old, was less than 4 feet tall and weighed only 49 pounds. She is a child and belongs at the children’s hospital. She still watches the kids shows and videos! She can’t be an adult.

Even though I objected and stomped my feet (literally), and called for the person who made the decision to come talk to me, it was to no avail. I was told that she was 19 chronologically and she had to go to the other hospital. They required an ambulance trip to the other hospital - 2 blocks away! We had issues when we got there. They didn’t have equipment or supplies that were the correct size - they had to get them from the children’s hospital from where we just came. No real kids’ videos and no way to hook up her dvd player to the big tv so she could watch her videos as we did in the children’s hospital. They wanted to perform tests more appropriate to adults and they lacked appropriate food/drink choices for someone with Rett.

Please, please, have this conversation with your doctors and the hospital in advance. You do not want to be fighting for your child’s life on one hand and fighting the hospital at the same time for the most appropriate place for treatment.

Many medical institutions are implementing transition programs to move the chronically ill children from the pediatric side to the adult side. If your child is approaching 18 years old, please check with your doctor and the hospital you use to make sure the transition happens more smoothly for you than it did for us. And call your lawyer while you are at it so you are able to make those decisions when you arrive at the correct hospital.