Lia: Stroke at Age 3, Illinois
We ended our 2016 celebrating with friends and pizza. We had a kiddie countdown to 2017 at a local pizza place. Life was joyous, kids were happy and we didn’t have an inkling of what was looming ahead for us. We called our parents and siblings and wished them a happy new year. As we wrapped up our evening, my husband and I were looking forward to a quiet evening reflecting on our 2016. Life was good!
January 1st, was a typical day at our house. We lounged and the kids enjoyed playing with their Christmas toys. Evening came and we started to wind down. Our 3-year-old little girl Lia fell, but it wasn’t anything out of the ordinary. It was a normal, unbalanced fall from a toddler right on her bottom. In fact, she didn’t even cry. Within the hour, I asked my husband to start bedtime. While trying to change her into pajamas, he noticed she wasn’t moving her right hand. He then called me over and seemed concerned. I asked her to “reach for the sky,” in my best Buzz Lightyear impression. There wasn’t much feedback but oddly, she wasn’t crying from any assumable pain. She then proceeded to lift her right hand using her left hand, which struck me as odd. We asked her if it hurt and she responded, “no”. Acting on gut instinct, I thought I better get it checked out so I drove her to the ER.
When we arrived to the hospital, Lia was very tired. I thought it was because it was past her bedtime. Looking back, I know she was having a stroke while I held her sitting in that emergency room. We were finally called to triage after 20 minutes or so. She was responsive but very groggy so I carried her to triage. I was asked the routine questions and the nurse took her vitals. Lia was asked to stand on the scale and she was unbalanced but she stood up.
After vitals, the nurse started to escort us to a treatment room. I asked Lia to walk because she was heavy. I held her by the hand and started to walk but I noticed she was dragging her right leg. I mentioned it to the nurse, “Hmm, doesn’t it look like she’s dragging her leg”? The nurse proceeded to pick her up and walk with her to the exam room and said, “She’s probably just very tired”.
We arrived at the exam room and the nurse asked what had brought us to the ER. I repeated the events that took place and it was determined they would move forward with an x-ray from the clavicle to the forearm. During the x-ray, oddly again, Lia stood still. The x-ray technician even commented how great of a toddler she was, so patient and still. We then went back to the exam area to wait for the doctor to examine her.
While waiting, Lia told me she needed to use the bathroom. I took her to the bathroom within steps from her bed. She was still very tired and dazed. After she finished, while assisting hand washing, she had a bowl movement in her pants. To me, this was strange as she’s toilet trained, but I told her we would clean her up. Thankfully, I always carry an extra set of clothes so we did. As we pressed on and walked out, I mentioned to a nurse staff member about Lia’s accident in the bathroom.
Shortly after that, both the doctor and nurse came over and shared that Lia’s x-ray showed nothing was broken. The doctor then began to examine Lia and started to manipulate the area. Peculiarly, she wasn’t crying. However, she was guarded with her right hand, as if something hurt. The doctor began to explain how common it is in children her age to sometimes get “nurse maid elbow” and he thought he heard a “click.”
Both the nurse and doctor thought her clavicle looked a bit dropped so they said, “maybe she just sprang it”. Another nurse came over with a sling and placed Lia’s arm in it. Again, she still was very guarded with her hand but not using it and no indication of any pain or retraction from her.
We were then discharged with a sling and advised to see an orthopedic doctor the following day. As we got home, I noticed she was rather warm. Assuming a fever was stewing, I put her in my bed to watch her overnight. In the middle of the night I woke up because Lia was screaming. She had a full-blown fever so I gave her Tylenol and she fell back to sleep. The next morning, we noticed she still was not using her right arm/hand so I called our pediatrician to find an orthopedic doctor. After describing our ER visit and the events that led up to that morning, now January 2nd, he immediately instructed us to take her to the ER and described her as having paralysis. After hearing the urgency in his voice, I put her in the car and rushed her to the Children’s hospital.
Upon arrival and assessment of Lia’s needs at Children’s and repeating again all the events that led up to us being there, the ER doctor wanted to take more x-rays. She mentioned they would order a CT scan as well. Finally, after x-rays and the CT scan, Lia was diagnosed with an acute ischemic stroke to the left MCA. After an MRA and MRI we later found out her stroke was due to a dissection of the carotid artery. My entire world stopped. I was told she would be taken immediately to PICU to begin treatment. This was the beginning of our 21-day journey.
Now a few months after her stroke, I’m upset and saddened by the misdiagnosis. However, I am beyond thankful for her champion recovery and the gentle care she has received since then. Now more than ever I see the need to educate others and share our story. As I tell Lia’s story with friends the common response is, “I didn’t even know children had strokes”. There is such a need to spread awareness and educate medical staff, caretakers and parents as well. Lia has taught me bravery, patience and is my true warrior. Although, I cannot repair the damage internally, we can certainly dedicate ourselves to sharing her story, in hopes it will save a life!
We are not convinced her fall caused the dissection in the carotid artery because she fell on her bottom and her reaction was uneventful. We truly feel she was having a stroke and fell because of that. As I stay up late at night chasing answers, I realize, more research is needed in spontaneous dissections and causes. While, she is not “out of the woods yet,” every day is a day of celebration.
Help us #MakeMayMatter for kids impacted by stroke! Share this story and #BeAVoice for pediatric stroke.