About a month ago during a routine check-up for Sarah as part of her school's annual medical update the pediatrician told me that she had a heart murmur.
In that moment it felt as if my own heart had stopped. I said, "What? How is this possible when she is now two-years-old, been seen and treated by a number of pediatricians over her life, and also had minor surgery last year to remove a cyst she was born with and the surgeon nor anesthesiologist detected any heart murmur?
Being in the doctor's office with Sarah on my own, with my husband at work, knowing I needed to drive her to school next, I realized that there was no time for me to lose it. I really wanted to scream or cry. I needed to compose myself as I was not going to be doing Sarah or myself any good if I had a meltdown.
At this point I needed to gather all the information necessary to take the next step. I was confused and upset trying to hold it together. The next step was to take Sarah for an echo cardiogram. And, the way these types of tests work trying to get an appointment for one on the same day is not likely. I wanted to fly out of the office and get her in for the test as soon as possible. On my way to the car I called Daniel and shared with him the news. By the time I came home he had called several hospitals in our area and scheduled Sarah's appointment for the following week. Our choice hospital in the area did not have available appointments for quite a while.
On the day of Sarah's test, the hospital staff was nice and helpful, and very good with Sarah. Following the test we were then told that the pediatric cardiologist on staff was not on site daily and would be reviewing the scans in a couple of days.
After a few days following Sarah's test we called the hospital. Still the pediatric cardiologist had not come into the hospital nor did he return their calls about Sarah's heart scans. After three weeks of a ridiculous number of calls by Daniel and I, and our pediatrician's office, to the hospital we had to take matters into our own hands. Still with no answers we were then advised by Sarah's pediatrician's office to sign a release waiver to get the scans sent to their office for review. We signed the release and the scans went to Sarah's doctor. Unfortunately, the pediatricians on staff felt that they were not qualified to review the scans.
So, now with a referral in hand to see a pediatric cardiologist the hunt began to find an expert that accepted our health insurance, as the hospital where the tests were done were useless at this point. My advice here, please consider any other hospital other than Jersey City Medical Center.
While it seems extreme to decide never to return to a specific hospital based on this experience, for me it's one too many experiences that make me hesitant to ever return there. That's just how I feel.
During this time, to give us peace of mind, while the search was underway, we shared the scans with my friend's husband, a cardiologist who treats adult patients. He said that after reviewing them he did not see anything unusual or out of the ordinary. He said that he would try to help us as well to find a qualified pediatric cardiologist too so that we could get a more accurate review and diagnosis. I very much appreciated his time and honesty. It also helped to provide me calm during this time of uncertainty regarding Sarah's health.
Working in health care public relations for well over a decade I am very well aware that it's imperative to take our children to experts who know little bodies and little parts. Children are not small adults. Therefore, it's very important to seek out medical experts trained to care for children.
Fortunately, I was able to track down a specialist who took our health insurance, had impressive credentials and indeed treated pediatric cardiac patients. We scheduled our appointment with him for his first available opening.
After several more tests, which Sarah was a trooper going through, she was officially diagnosed with what's called an "innocent heart murmur."
According to the American Heart Association, innocent heart murmurs, especially those seen in children, do not require medication or a need for cardiac reevaluation unless the parent/patient or doctor has more questions. Further, they emphasize that children will not have cardiac symptoms and do not have a heart problem or disease. "The child can be as active as any other normal, healthy child."
I am happy to report that Sarah continues to be a crazy active, happy-go-lucky toddler enjoying life, running around, climbing trees and making us laugh on a daily basis.
Through this process many friends and family have been supportive and also shared their own similar experiences. Thank you to everyone who supported me during this challenging time and helping me to realize that Sarah would be okay.
As parents we are our children's advocates. When they cannot speak or tell us exactly what they are feeling or experiencing we must help them. We must provide them the best care possible and consider all of the options. Further, as I have learned in life, and especially since becoming a parent, getting worked up and stressed out when answers are not firm or final doesn't help you or your child. With answers and solutions, problems can then be addressed, sometimes solved, and done so in a manner best for all involved.
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