“Your child’s body is telling you something’s wrong. You need to take her to the ER.”… “Her blood is like water” these words echo in my head to this day. We were told they found the answer as our little girl lay in a hospital bed less than a month before her second birthday. In the midst of a scary situation, we had to be our child’s advocate. I asked if they were sure… I asked if they ran all the tests …they claimed that it was “iron deficiency anemia” yet each person I spoke with said they had never seen it get this bad.
She started taking iron daily. Blood test after blood test from our little one’s arm until finally her counts were high enough. They released us said take her off the iron… no need to follow up.
Double Check
Her primary care appointment came along. I asked to check her hemoglobin levels. Another needle prick for my baby, but I needed peace of mind. Test results came back. I dont remember how much her hemoglobin had dropped, but it was too much for one month. We needed to advocate for our child. Had we not checked she would have been back in the hospital within six months. That’s the position specialists left my child in.
Back to those specialists we went. They ran another test and found a source of bleeding. A test they should have run in the hospital. The diagnosis “It’s most likely a food allergy.” he said. “Its most likely not a food allergy. I don’t know why he would say that.” She said. I learned quickly not to assume doctors communicate in the same office.
To the hospital for scans. The discovery of a mystery shadow from the scans led to more specialists. Finally, cleared for an endo/colonoscopy. They found ulcers in her esophagus. What caused these ulcers? Well, no answers from the doctor. They just sent us home with medication again.
New Doctors
As we grew tired of the doctors lack of answers and inconsideration for our daughter, we began the process of switching doctors hoping that everything would be completely checked before our child would be released from medical care. During this time our daughter was sick with normal fever, cough etc. a couple times within a month. Two rounds of antibiotics later, I took our son to his primary care appointment with his sister tagging along for the ride. I asked our primary care to “check again” listen to her lungs and see if what they told me was “pnemonia” had cleared up.
The sound was still there and suspicious so rather than another round of antibiotics, an xray was ordered then a CT scan. They found something. That mysterious shadow was so much more.
They called it a “hiatal hernia”. Her diaphram had a birth defect. The “hole in the wall” was too big. Instead of allowing food to exit her esophagus through the diaphragm to the stomach, her stomach was moving up and down through her diaphragm. That makes sense the rubbing of the movement caused the ulcers and the ulcers caused the bleeding. Finally a complete answer for my science brain!
Next, surgery for our two year old. A hospital once again. Surgery complete. Now to be sure the ulcers and bleeding resolve themselves. A final procedure, a final prick to see that all is clear, but we will check and double check that there is nothing more lying beneath the surface.
Skeptical Staff
In this process, I had doctors blow off my questions. I had nurses roll their eyes when I patiently talked my daughter through routine vitals checks. I had anesthesiologists in shock that I wouldn’t let my two year old child be taken awake to an OR with strangers. I had sketch nurses try to walk away with my child “just to see if she would”. I had our decisions questioned and medical staff treat us as “just the parents”.
So let me just clear something up. No, doctors don’t get to tell us how they will care for our child. Doctors get to discuss the course of care with us so that we can make informed decisions. While many medical staff during this rough year were kind, most were giving side eye and found it a bother for parents to ask questions and be involved in our daughter’s medical care.
It’s My Job to Advocate
I advocate for my child because that’s my job and though I may not have gone to medical school, I will forever know my child better than someone who’s walked in a room with a medical chart. Her care is more than what medicine she should take. Her care is her favorite blanket to fall asleep with before surgery. Her care is checking her stuffed animal’s heartbeat before checking hers. Her care is emotional and physical. Her care has been assigned to her parents by God and doctors are simply a tool to assist in that care.
Yes, I micromanage the doctors. Yes, I have them check and double check. Yes, I advocate for my child. Because at the end of the day, we are the ones holding her through her pain and her fear.
Keep asking questions, mama (and daddy)! Keep advocating for your children and training them to advocate for themselves in this crazy world.
</>
Leave a Reply