Help Baby Nariah and Family Through Medical Crisis
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On September 27th, 2024, my daughter Nariah was sent to the emergency room for testing by her doctor for possible neurological damage after her eye looked droopy. Since then, we have been back and forth to Rochester, with the last 3 weeks being spent in Rochester, almost 3 hours from home, trying to find out what the tumor behind her eye is. I am extremely grateful for any and all help received as my husband has had to miss work taking care of our 2 older boys, this will help with stress as well as for gas, food, and basic necessities that are needed at home and here in Rochester. Thank you. This is the full story:
On August 27th, I called Nariah's dermatologist because it seemed like she was in pain, and we thought it was due to the hemangioma on the top of her head. She was reaching for that side of her head and hitting her eye instead. The dermatologist looked her over and then asked about her eye looking droopy. She then instructed us to contact her primary care team regarding the eye. Her pediatrician told us to take her to the ER for the possibility of a neurological condition. They did a CT scan and a ton of blood work and, at this time, believed she had a TIA or a mini-stroke. They said there was nothing they could do as it had already passed and sent us home as she didn’t appear to be having a current stroke either.
On the 29th, her eyelid was red, and she was again showing signs of pain, so James took her to the ER again. They said that due to everyone looking in her eye, she got a small infection and put her on Augmentin for 10 days. We thought it was getting better until October 6th, when it got worse, and her eyelid was starting to swell. She was in a lot of pain, and it didn’t seem like the antibiotics were doing anything to help. James took her to the ER again. This time, they gave her erythromycin ointment and referred us to ophthalmology to have a more in-depth look. We saw them on October 10th, and they decided to try clindamycin for 7 days but said if it was worse, we were going to be admitted for IV antibiotics to treat the orbital cellulitis.
On October 11th, they wanted to see her again, and it looked great, so they said the infection was going away, and we were on the mend. It was still red and swollen but not as badly. On October 13th, I woke up and immediately felt the need to call the on-call ophthalmologist, and he told me he would meet us at the ER. Within minutes of getting to the ER, he was there telling me they were going to do another CT with contrast this time and that we would likely have to transfer to Rochester hospital for direct admission to give IV antibiotics. At this CT, they were able to find out it was never a stroke; it was, in fact, an infection, and she needed a lot of help, and Eau Claire was not prepared for this much help, so we were taken by ambulance to Rochester.
We spent 4 days there on IV antibiotics with very minimal issues besides a pretty nasty diaper rash due to all the antibiotics. We went home on October 16th. On Friday, October 18th, we woke up to it being the worst it had been yet. Her eyelid was swollen and red, and it looked very painful. We called the team here in Rochester and sent photos through her portal, where they told us she didn’t need to go back to the ER, but she needed to come to Rochester; they were directly admitting her. We got there, and they immediately came and started her on 3 different IV antibiotics. They said not a whole lot would be done right away and to relax for the night.
It kept progressively getting worse, and they decided to do another CT scan. They never told me the results of the CT scan, but they decided to do an MRI at 8 am, so she wasn’t able to eat that morning. Then teams started coming in. There was the regular pediatric team, ophthalmology, infectious disease, and neurology. They told me they found a mass that they weren’t sure what it was. They said there was a possibility it was an infection in her brain and increased the IV antibiotics while they discussed the next steps. It just kept getting worse.
On Monday, October 14th, oncology came in to ask me about the family history of cancer as he said there was a possibility of it being cancerous. He then told me that at 2 pm, all the doctors on her team, as well as multiple doctors from all over the world, were going to meet to talk about what the next steps would be. There were over 100 doctors at this meeting where they decided the best-case scenario would be to place a central line in her chest, do a repeat MRI, biopsy the mass, and do a lumbar procedure on Tuesday. At this point, my mental health took a massive hit. It was so bad watching my little baby get poked and prodded over and over again. Watching her get IV after IV placed because the Vancomycin was basically destroying them. Watching them poke her daily to get new blood. Them using devices to hold her eyes open so they could look at them properly. Watching all of this and knowing there was nothing I could do.
At this point, social services came by and offered me a counselor and highly suggested I go to the Ronald McDonald House even if just to get a nap and a warm meal. This was the best decision for me as I was able to leave her with people who would take care of her, and I could take care of myself as well. Which was definitely needed because by Tuesday morning, the swelling was the worst it had ever been, and her eye was protruding almost an inch beyond where it was supposed to be due to this mass. The doctors called me after the surgery where they said they didn’t find what they thought they would. They said they thought it was soft tissue with maybe some liquid mixed in from infection, but it was hard, muscley scar tissue. They said at this point they didn’t think it was an infection, and the rheumatology team joined the already existing teams. They started talking about what all the possibilities could be, from cancer to autoimmune diseases. They found out pretty quickly it wasn’t an infection at all. The tumor was more than the easiest option. But as results keep coming in, we are getting no answers, and everything is coming back as negative.
Dad and big brothers came to Ronald McDonald House for the week due to not knowing what the future will hold at this point and just needing to be together as a family. We got to spend Halloween together, and they all got to trick or treat together and have a fun day. That night, the results from pathology came back. At this moment in time, we believe it’s not cancer. It’s also not IgG4, which is the autoimmune disease they thought it was. They have found a type of autoimmune disease, but they aren’t sure what type yet, and they found a vascular malfunction disease in her tissue. These are the only answers we have thus far. Monday will start a whole other part of this chaos as we find out what the treatment plan is and what the future will hold for us. Please keep little Nariah in your prayers and thoughts while we navigate through this.
Organizer
Frankie Freeman
Organizer
New Auburn, WI