May is American Stroke Month, and we want to celebrate the strength and resilience of stroke survivors by sharing their stories with you throughout the month. This particular story highlights that a stroke can happen to anyone at any time - and at any age. In December of 2017, 10-year-old Gracie Goss had a stroke. Gracie's story is told by her fearless mother, Andrea and we can't thank her enough for sharing Gracie with us.
My name is Andrea, and I have been married to my husband, Jon, for 16 years. We have 3 daughters, Lilly (12), Ruby who is Gracie's twin sister (10), and Gracie (10). I am a RN with a background in Labor and Delivery, Pediatrics and currently surgery. Jon is a Registered Forester with the state. Our lives revolve around our children and their activities, just as most parents these days.
I have always called Gracie “Amazing Gracie” because she is a blessing to us, and it was inspired by the song “Amazing Grace”. There were things she did BEFORE her twin sister Ruby did them, and that truly amazed us! She was always determined to do what she needed to do to succeed and overcome. That strength has helped her persevere through the events that started last December.
December 5, 2017 started off just as any other morning starts: early. I got up at 5 am to get ready for work and then awakened our girls at 5:20 am to help them get ready for school. It was a busy morning, just as any other morning, but nothing out of the ordinary. At 5:50 am, I left for work. In the next 10 minutes, our world was turned upside down. Our 9-year-old daughter had a massive stroke.
That morning, the girls were going to school with their daddy because our oldest daughter had archery practice. At 6:00 am, they were getting into the truck. That is the point at which they all noticed something was different with Gracie. Ruby told me that when they were walking out the door, Gracie dropped her backpack and her Pop Tart and tried to pick them up, but could not stand back upright. Jon said that she had to crawl down the stairs, but he thought that she was being silly. He went ahead and took them to school, but at some point Gracie vomited and he decided to bring her home for the day. Gracie’s condition continued to decline and he started texting me at work to ask me what I thought.
I was in the middle of a big surgery that morning. I happened to look at my phone and realized that there was a text from Jon. It basically said that Gracie was sick and had vomited, and she couldn’t talk. I just said, “Ok, she is probably just hoarse from vomiting. Just keep her home.” Then he went on to tell me about our dog also being sick and I was actually more worried about the dog than Gracie, until the next text. The next text I received was telling me that Gracie was walking into the walls, and she couldn’t talk. This text came with a video. Instantly, I noticed that the right side of her mouth was slightly drooping. I also noticed that she was pulling her head to the left and that her eyes were also pulling to the left. She was also having a hard time speaking. She wasn’t hoarse, she could not find her words. But, the scariest thing was that she was crying. She said that her left eye hurt. She NEVER, ever in her entire life complained of pain. She has had busted eardrums that we didn’t know about, she has sat in fire ants and we never knew it, and she had her tonsils removed and directly after surgery, she ate a pancake. Pain was just not something that she knew, until now. I told Jon to bring her to our local hospital NOW because I did not like the way that she looked at all. Then, I showed the video to my boss and another coworker because I really thought that I was losing my mind, but they too saw what I saw. At this point of the story is where I begin to lose all sense of time.
Around 9:00 am, Jon walked into the ER waiting room with Gracie at his side. Immediately when I saw her, I broke down as I saw that something was terribly wrong. I begged for them to take her back immediately, and they did. Shortly after getting into a room, the ER doctor came in to assess Gracie. He immediately ordered a CT scan. The results showed some changes, that could have been a result of her Down Syndrome, but he couldn’t rule out a stroke, but he could not confirm one either. He asked whether or not I wanted stoke protocol for her, and I said that I did. I didn’t know what exactly stroke protocol was, but if it was going to help, I wanted it done. I still couldn’t believe and didn’t believe that it was a stroke. She was 9-years-old and healthy. What healthy 9-year-old has a stroke?
Our next step was getting to Arkansas Children's Hospital (ACH) quickly. The helicopter was available, but I opted to take her by ambulance because she was stable. She wasn’t having a stroke, I had convinced myself.
We arrived at ACH around 11. Gracie was speaking, still having a hard time with some words, but she could still talk. She was walking to the right but didn’t exhibit any weakness in her legs. She did seem to be losing some strength in her right arm. I don’t know how many doctors we saw in such a short amount of time. At least 6. About an hour later, Gracie was headed to get an MRI. I stood by her side the entire time and it seemed to take an eternity. When it was finally done, we were moved to a room that I thought was for recovery. An anesthesiologist came out to talk to me and started asking questions not related to the MRI, but more of a pre-operative assessment. About 5 minutes into this assessment, I said, “What is going on? Are we getting her ready for surgery? I don’t know what’s happening.” That is when a radiologist walked in and led me to the “reading room” where they look at films and MRI’s, CT scans, etc. He had Gracie’s MRI pulled up and what I saw made me ill. I felt like the world was spinning in slow motion. I could hear, but everything sounded like I was under water. Massive stroke. 4. Dead brain. Surgery. What? She is 9?!
After that moment, everything is kind of a blur. She was rushed to surgery, the girls were devastated. Jon was silent. I was falling apart on the inside.
The next day or two were spent in PICU. I can’t really remember. I do remember that Gracie got up the first night to use the restroom and her leg didn’t work at all. The PICU nurse had a diaper on her, but she refused to use a baby diaper and we went to the bathroom. That is an example of how much of a fighter this child is.
On Thursday, we were moved to the Neuro floor and speech therapy began. It was so hard to watch as the child who previously spoke a whole lot could now only say “one, two, one.” Those words were a struggle.
On Sunday, we were moved up to rehab. Two weeks of grueling work for Gracie. Two weeks of grueling work for her therapists. Anyone who knows Gracie, knows this is true. She is very head-strong. Determined, but stubborn. She made such progress in such little time. Everyone in the rehab department was amazing! The work that they do with the children is phenomenal. On December 23rd, we were released! Home for Christmas! Thank God above for this gift!
Not long after getting home is when all of the disappointments began. I think all that I need to say here is one word: INSURANCE. We are very privileged to be able to have insurance for our family. I understand that. But, when you have to navigate all of the red tape and twists and turns along the way, on your own, it is devastating. We couldn’t get anyone to evaluate her for therapy for probably three weeks. One place, who is a well known pediatric therapy center, would barely return calls. That was the place that Gracie previously used for 4 or 5 years. With the help of one of her favorite therapists, we FINALLY found an adult PT that would take her. I think that started towards the end of February.
Everything was going great. Gracie was in therapy twice a week. A therapist was coming to the house twice a week, everything was finally working out until around the end of March. Our insurance company had denied Gracie’s claims because the particular therapy center was out of network. No big deal, right? Gracie has TEFRA. They will cover it. Wrong. TEFRA was also denying claims. We now have $2000 worth of therapy that no one will pay, and we can’t pay. So, we had to pull her out of therapy, which is bad, because a person recovering from a stroke only has so long until they aren’t going to recover anymore. Right now, we are about at that mark.
There is more we can do as parents, community members and advocates to help END STROKE and raise awareness about the warning signs of stroke. I am so glad the American Heart Association/American Stroke Association is working towards this goal! Please take a moment today to join the movement and become an AHA Advocate so that we can fight together! Simply CLICK HERE.
Mom of Gracie, Lilly and Ruby
Stroke is the No. 5 cause of death and leading cause of disability in the United States, yet, many Americans don’t think of stroke as a major health concern. But the truth is, a stroke can happen to anyone at any time, and at any age. We want to raise awareness through the voice of someone who has survived a stroke or their loved one. This is where we need YOU!
The American Heart Association is seeking advocates who are willing to share their stroke story during the month of May for American Stroke Month. We’d love to talk with you about how your story can help others.
Together, we can save lives and fight to end stroke.
P.S. Not a stroke survivor? No problem! Although our focus in Stroke Month is collecting stroke stories, you’re always welcome to share any story with us.
The American Stroke Association, a division of the American Heart Association, is committed to advancing public policies that will allow children and adults with stroke to live longer and fuller lives. These policies include:
• More funding devoted to researching the causes and treatment of pediatric stroke;
• Support for the Centers for Disease Control’s Birth Defects Centers to advance our knowledge of the risk factors of pediatric stroke;
• Support for activities to increase awareness among parents, families, caregivers, and health care providers about pediatric stroke; and
• Monitoring the implementation of health care reform to ensure access to adequate, affordable insurance coverage, including coverage for age appropriate rehabilitative and habilitative services.
The full article "FACTS, Knowing No Bounds: Stroke in Infants Children and Youth can be found HERE.