What It Means to Be a Medical Mom

“You know more than the cardiologist!”

My husband, Steve, said this after an appointment with our daughter’s cardiologist. Previously, I had tried to explain to the doctor what I had learned at a recent conference about our daughter’s genetic condition, Turner syndrome (TS) and how it related to her cardiac issues. He didn’t believe me at the time, but when I presented him with the published papers later, he did.

I was so out of it when we heard about our daughter’s heart condition. We knew within 24 hours that there was “something wrong” with our baby’s heart. In the beginning, I was so overcome with emotion and had just given birth to our daughter that I had a hard time understanding anything. My brain was in a fog and I couldn’t really grasp anything. I’ve talked to a lot of moms who felt the same way, especially if their child was diagnosed following their birth. Luckily, my husband could listen, ask questions and understand the doctors. At this point, there is no way I could have imagined myself knowing more than any doctor.

Many of us have similar stories. We start out never having heard of the diagnosis our child has, while months and years later, we are medical moms.

Whether we want to or not, we end up becoming medical experts on our child’s health issues. None of us are prepared for a diagnosis, but we do the best we can because it is our beloved child who is sick. We keep track of laboratory testing such as blood and urine, bone age, hormone levels, and many more depending on their conditions. We know exactly what to look for on the echo, X-ray, EKG, hearing test, vision test and more. We talk in medical terminology like a seasoned physician.

We become experts in pediatric “ologists.”

In the beginning, we have limited knowledge of what medical specialists do, but after a while, the language becomes second nature. Cardiologist, gastroenterologist, oncologist, endocrinologist, neurologist, nephrologist, ophthalmologist and audiologist are just a few of the specialists our children may see to help manage their health condition. There are also many different kinds of therapists such as physical, speech, occupational and more. If it looks like a lot to keep track of, it is. However, we do it anyway because our children’s health is at stake.

With my daughter’s genetic condition, I managed all of my daughter’s health care needs and coordinated all the specialists. There wasn’t really one specialist who overlooked her care. I could do this because I followed the Clinical practice guidelines for the care of girls and women with Turner syndrome. I realized at some point along the way that I was the expert on our daughter’s care. There were far too many specialists involved for any one of them to understand the broad view.

I suggest you find the clinical practice guidelines related to your child’s condition or disability. It will help immensely.

If you are truly lucky, you will have a pediatrician or family doctor who overlooks their care, but you still need to see the overall picture of their health. This understanding will help you make wiser decisions for their care.

We quickly found out that a note pad and paper wouldn’t help us keep track of all the doctors and appointments. When my daughter was diagnosed in 1999, I used a multi-subject notebook which included folders for each specialist and put all notes and medical information in each folder. Echo results went with cardiology, and bone age went with endocrinology. I also have multiple documents on my computer of published papers and articles related to my daughter’s issues and advice from other parents. Nowadays, the patient portals keep their health care records at your fingertips. It has made life much easier.

When our child has a complex illness, we do everything we can to make their lives easier. In the process, we earn our own parenting MD.

Never forget that you know your child better than anyone else.