HOPE FOR PEDIATRIC STROKE-AMELIA

Your daughter has suffered a stroke.” Is not something I ever imagined someone would tell me. It felt like my heart was ripped out and torn into a million pieces. All the plans, excitement, joy we had turned into worry and painful heartache. I had a healthy pregnancy with no complications. On Saturday September 9th 2017 I arrived at the hospital around 7pm because I was having contractions about 3 minutes apart. I was admitted and placed in a room. The night was long. Amelia started having variable and late deccerlations at times. The CNM came in and told us Amelia may be holding on to her cord, so she wanted to try an Amnioinfusion. By that time, I just wanted Amelia out. We decided to try it. The amnioinfusion did not work. Amelia was still in fetal distress. I felt so droggy from the epidural. I was placed on oxygen later that night. I was told the oxygen was for her, not me. They wanted to make sure she was getting enough. It wasn’t until around 4:30 a.m. a doctor came in and said I need to have a c-section. I was terrified. This was not what I had in mind. They called the staff in (the hospital didn’t have staff on site) to perform a c section. I was taken to the OR around 6 am and gave birth to Amelia at 6:31 am on September 10th. Amelia had her umbilical cord wrapped around her neck and legs. Her Apgar score was 2, and 8 respectively. Apgar score is a scoring system doctors and nurses use to assess newborns at one minute and five minutes after they're born. The Apgar score is based on a total score of 1 to 10. The higher the score, the better the baby is doing after birth. I got a glimpse of my precious baby and she was quickly taken for medical attention and I was sent to Post OP room. When I was sent into the post delivery room, there I was united with my husband and our newborn. I was in heaven. Seeing her was love at first sight. Having a child is such an unexplainable feeling. Saying it’s the best feeling in the world is an understatement, it is so much more than that. I’m so grateful and blessed the Lord blessed me with a child. We had visitors come meet our baby that morning. When it came time to feeding Amelia, she had trouble latching. As the day went on, something did not seem right. Amelia would sleep, not want to feed, and then we noticed she was turning her head severely to the right and jerking her arms and legs. It was so subtle. We voiced our concerns to her pediatrician (at the time) and we were assured that it was normal. As the day went on, we had more visitors come by. While we had one visitor in, Amelia started the head turning and jerking movements again. We notified the nurse and eventually the NP on call came in to assess Amelia. She did not say what was going on with Amelia. All she said was she’ll have to be sent to a different hospital via helicopter. Amelia was taken to the nursery, and there she was connected to a pulse oximeter. Amelia’s oxygen saturation’s were dropping. She was placed on oxygen and was having seizures more frequently. It was late at night and I could not bear the thought of my daughter being in a whole different city without me at her side. I begged the midwife to release me early. After some time Raul and I left the hospital. I left the hospital with no pain medication. I was hurting so much but all I could think about was Amelia. The NICU called my cellphone wanting verbal consents for a lumbar puncture. Raul and I were still on our way to the hospital. Amelia had a week stay in the NICU. During that week, many tests and lab work were performed to find out what was going on. Amelia suffered a right MCA infarct and was experiencing seizures as a symptom from the stroke. She was started on two anti seizure medications. What seemed like a long week, it had come time to take our sweet baby girl home. We continued the medication at home and tapered her off by four months of age. Amelia has not experienced any seizures since her NICU stay. We followed up with her pediatrician (at the time) and voiced another concern we had. Amelia’s chest would feel wet, cough, had watery eyes while feeding. Which are signs of aspiration. Again, this doctor blew it off. Good thing we had a follow up with a different doctor is San Antonio. We told her and got a order for a swallow study. Turned out Amelia was silently aspirating. We started thickened fluids (makes it easier to swallow). Amelia started OT at two weeks old, ST with feeding and swallowing around April and PT followed. Despite Amelia’s disability and diagnosis (stroke, dysphagia, cerebral palsy, developmental delays) she amazes me every day with her resilience and perseverance. She is my HERO. Slowly but SURELY Amelia is compensating and In my hopes will fully recover. I expect nothing less from her. Other than her left sided weakness, most people don’t realize she has a disability. Amelia is so smart and understands so much. She is NOT defined by her diagnosis. Amelia’s neurologist informed me about neuroplasticity. It’s where the brain can make different connections or rewire to compensate for the side that’s affected. THAT’S what I’m holding on to. No matter how many times I just want to curl up, cry my eyes out and just ask why, I will remain strong and be Amelia’s advocate, her backbone. I pray that Amelia doesn’t have to struggle for things that come easy to others. Til this day doctors can NOT tell me what caused her stroke! It was NOT anything genetic, disease, clotting disorders, infections, etc. Other than the obvious complications during delivery. All donations will be used for Amelias' doctor's visits, therapy services, swallow studies, thickener, etc. Anything is greatly appreciated. Thank you in advance.