The birth of my youngest child followed a normal pregnancy and an uncomplicated delivery. We left the hospital with our perfectly healthy baby, eager to introduce her to her siblings and the world. We had no idea what medical problems we would soon be enduring with her. Nothing could have prepared us for it.
Within a few weeks of going home I observed her breathing loudly. We made two separate visits to our pediatrician, and both times were reassured that she was fine, even after I mentioned that the loud breathing seemed to stress her. On the third visit with the same concern, I showed our doctor a video I had taken with my phone of the episode. Once he saw and heard the video, he validated my concerns and decided to send her for a chest x-ray.
Two hours later, we ended up in a pulmonary specialist office at a Children’s Hospital. She was diagnosed with laryngomalacia–a “floppy” airway–which was complicated by severe gastroespophogeal reflux disorder (GERD), another diagnosis that she would soon be given. This would not be the last time I had to push a physician into taking my concerns seriously and get them to recognize that I do know a thing or two about my daughter.
She went on to have blue spells, needed oxygen and eventually surgery to correct her breathing issues at the tender age of eight months old. Two months after her surgery, I noticed she wasn’t responsive to my playfulness and seemed to be in a fog. I called the pediatrician four times in one day reporting that something was just not right and that I was very concerned. All four times I was reassured that she was fine, and that it was likely just her reaction to a recent UTI. One hour after my final plea for help, she had a seizure in my arms and was rushed to the hospital, blue and unresponsive.
After hearing that she had a UTI, the physicians in the emergency department quickly and carelessly diagnosed itas a febrile seizure. I told them over and over that she did not have a fever and had not had one all day. They stabilized her and sent her home, reassuring me she would not have another seizure.
Two days later she had another seizure. After a long series of hospitalizations and tests that followed, she was eventually diagnosed with a rare monogenic form of diabetes, and her seizures had been from severe hypoglycemia. Months later, she started having blue spells again during her sleep that were repeatedly dismissed by her physicians. A sleep study was ordered after I presented them with a video and pictures of her coloring following sleep. She was diagnosed with both obstructive and central sleep apnea.
Instead of enjoying every moment of my youngest and final child’s infancy, and “just” being her mommy, I quickly became her case manager, full-time nurse and advocate. She did not have a voice and was nowhere close to the age where she could report how she felt, so it became my job to be her voice and obtain the best care for her possible.
I like meeting new people and am easy to get along with, but I had plenty of friends and was not at the doctor’s office to make another one. So I decided to put my polite, quiet nature aside. If she turned blue three times a day, I was on the phone three times that day. It turns out my most valuable tool turned out to be my smart phone. Video and photographic evidence of my concerns was able to tell the doctors what I did not have the medical vocabulary to describe.
It has been a long 15 months and my sweet baby girl has had her ups and downs, but I like to think that I played an integral role in solving some of her mysteries and ensuring she received appropriate diagnosis and treatment.
Here is what I have learned about how to be effective in advocating for your young child’s medical concerns and needs:
1) Stay calm. It was very easy to become angered by a physician telling me everything was just fine when I knew otherwise, but keeping my cool and dealing with it when I’ve had a chance to take several deep breaths proved to be effective. Yelling gets you nowhere, and in order to get your point across effectively, your mood needs to be stable. Leave the office, drive home, listen to the radio. If your child is an inpatient, go for a walk, grab a cup of coffee, scroll through some cute pictures of your kiddos. Whatever calms you, employ that strategy and call back when you are able to have a productive conversation about your concerns.
2) Vent to your friends and family. I always feared that I was a burden to my friends and family and that they had “heard enough.” I worried that my situation with my daughter would drive them away. Who was I kidding? They were not going anywhere. I would be there for my friends just as they were there for me. If they ask how you are and what they can do, don’t answer “fine” if you’re not. Tell them how you feel and what your frustrations are. Get those frustrations out so, again, you can be productive when dealing with your concerns head on.
3) Realize that you do have choices. Although I maintained my composure so that I could maintain a good, working relationship with her current physicians, I also knew that there were other specialists out there and I was allowed to shop around. Call your insurance company and find out what those options are. Call other offices and let them know what you need and determine whether or not they might be a better fit for you and your child. Second opinions exist for a reason, so don’t be shy to get one.
4) Accept help. If someone offers to take your other children for a play date, or to send a meal up, thank them and accept. You will need help to get through this, and you would do it for them as well.
5) Trust your instincts. I have never experienced such strong mother’s intuition as I have during this journey, and nine times out of ten I was right. Hearing a doctor tell you your baby is fine should be reassuring, but when the pit in your stomach tells you otherwise, then you need to voice what your gut is telling you. Don’t be shy. Don’t give up. There are some great doctors out there and somebody WILL eventually listen to you. Even though the end result may not be great news, having a diagnosis is the “good news” because that means you can start addressing the problem instead of searching for answers.
Michelle Ogniewski is a mom of three and full-time advocate for her kids. She lives and writes in Saratoga Springs, New York.
