When the Journey Began…

Angelica’s journey began the day she was born on April 16th, 2023. When Angelica was delivered, the excitement of meeting their baby girl turned into fear. Seeing all the port-wine stains on her little body and wondering what is that!? They thought she was “bruised” during delivery. The nurses took her away to check her out. Also finding that she had an extra heartbeat. Brittany & James were scared and confused. Once bloodwork and tests were run, the doctor returned to them and explained the port-wine-stains. He explained these could be just birth marks. Or they could have an underlying condition. Angelica’s pediatrician wanted to rule out Sturge-Weber Syndrome and they were referred to several doctors. Before seeing the neurologist, at about 2 months of age, she had a staring seizure. At that time, she was prescribed Keppra and baby aspirin. She went to an eye doctor that specializes in glaucoma, a neurologist, dermatologist and a genetic doctor. The neurologist first did an MRI. Those findings determined that baby Angelica did have Sturge-Weber Syndrome (SWS) and she had brain loss on the left side of her brain. Next, he ordered an EEG. This was a 6-hour test. Those results showed that she did have seizure activity going on in her brain. Putting her at high risk for seizures. Despite the medication, she did have a seizure at the age of 4 months, on August 19th, 2023. The seizure started with her right hand/arm shaking, then it went to her right leg. As other seizures followed, her eyes would deviate to the right side as well. She was hospitalized for 6 days at Children’s Hospital Milwaukee WI. She had uncontrollable seizures for 3 entire days. The seizures were coming from the left side of her brain only. This was a terrifying thing to see. You are there helplessly looking at your baby unable to help her. These seizures were called focal seizures. She did regress with her development. She was almost rolling over, then didn’t know how to roll over. Physical therapy was started. The were to work on strengthening her right side and treating her torticollis on her left side of her neck. Things were progressing slowly. During this time the neurologist was discussing disconnecting the entire left side of the brain to stop the seizures. At that time, they thought that was the only part of her brain that was affected. Brittany and James had many discussions with each other and close family members. Angelica’s case was brought before 10 other neurologists to get their opinion as to what would be the best thing for Angelica to grow up and live a normal life. It was decided they would go ahead with the disconnection. Angelica would have an ear to ear cut across her head, and hair would not grow there. She would also lose the use of her right hand and ankle. The tentative date for the surgery was January 15, 2024.

Then she broke through the medications and had another seizure while at her daycare. This happened on October 23, 2023. This seizure was different because these were affecting her left side which means her right side of the brain was causing the seizure. The seizure began on her left hand, then her left leg, then her head and then her chest. She was transported to the local hospital via ambulance and flown flight for life to the Children’s Hospital in Milwaukee WI. She had uncontrollable seizures for 7 days. The average seizure was 20 minutes. Her longest seizure was 49 minutes. The seizures coming from the right side of her brain caused respiratory distress and she coded. The seizure that caused that, started on the right side of her brain and jumped to the left side. Her entire brain was seizing causing the respiratory failure. This was by far the worse day of our lives. Witnessing a code blue is nothing I will ever want to witness again! They were able to stop the seizure, and her breathing returned. She was also having clinical seizures while she slept. These are seizures you don’t see or know are happening. Also, she was at high risk of stopping breathing during these seizures, so it was very alarming to learn she is having them while she sleeps. Another MRI with contrast was done. Those results showed she had malformation of blood vessels on her lower right side of the brain that didn’t show up the first time. So now she has SWS on both sides of her brain and two epileptic brains so to speak. The left side causing focal seizures, and clonic-tonic generalized seizures on her right side. Very Rare circumstances. The neurologist studied her eeg all night long. Once he figured out where the seizures were coming from, he was able to come up with a medication cocktail to stop the seizures. Those medications are; Keppra, Vinpat, Onsi, Trileptal and phenobarbital. She takes 5 Viles twice a day of these medications. Giving all of these medications to her is a terrible experience. She cries and gags on it. Once they learned she had SWS on both sides of her brain, they decided that to disconnect the entire left side of baby Angelica’s brain, was not a good decision because the seizures were also coming from the right side. No matter what, she will need medicaiton for the rest of her life. Other treatments may be available to her, but they want her to be at least 12 months old. Most changes with the brain happen within the first year of life. Once they know for sure what they are dealing with, a treatment plan will be implemented.

Recently, Angelica saw a neuropsychologist. This was a test done to see where she is at developmentally for her age. She did awesome! At this time, she is at a 5-month-old developmentally and she is almost 8 months old. With as much as this little one has gone through; the doctors are very pleased and hopeful she will continue to progress.

There are so many unknowns at this time. It has been an emotional rollercoaster for Angelica’s family for sure. Emotional strain and financial strain. Angelica is now receiving physical therapy, occupational therapy and speech therapy. Whatever is out there to help her become the person she is meant to be, we will do for her. Her journey has just begun. Thank you for joining us for Angelica’s journey.