For what felt like my entire life, I had always dreamed of having a family of my own– how it would feel to have a tiny human growing inside my body, and experiencing the beauty of labor. After three years of trying, I found out that I was pregnant. I felt so happy and lucky that I had a very normal, healthy pregnancy. I was 24 years old, and was induced around 42 weeks. I was given the epidural, my water broke, and we were off! I was so excited to push and have my baby. Unfortunately, despite all my dreams and ideals, it didn’t happen as easily as that.
In fact, my labor was very, very traumatic. After pushing and pushing for what seemed like forever, the obstetrician told me, “You aren’t doing it right,” and stopped the epidural. Four hours, and three suction cups (used multiple times) later, my daughter, Adora’s, heart rate dropped on the monitor. Finally, the doctor decided to do an emergency cesarean. I remember my mother banging on the door, worried to death because of the amount of time it was taking. I was taken to another room, given a spinal tap, and there was my baby, right in front of my eyes… purple.
I knew that I was supposed to hear her cry… but I did not. She was completely silent. I was taken to yet another room because my body was trembling–I was in shock. When the doctors finally came in to give her to us, Adora’s father immediately said, “Something isn’t right…” and he was correct. After all, she was purple and not breathing right, and she was not crying. The nurse took her back to the nursery, and, a short while later, the pediatrician came in to tell us that she was having seizures and a helicopter was on the way. I hadn’t even gotten to hold her. What in the world was going on? Was she okay?!
I was stuck in the hospital, wild with fear and worry. I had to say goodbye to my newborn baby through a clear box before she was put on Angel One, and I watched her leave in a helicopter from my room. I didn’t know if I would ever be able to hold her, or see her again. I felt hopeless… so much so that I couldn’t move. My entire body was swollen and my heart was broken. We were both confused, in a state of pure and utter shock.
Adora’s father jumped in his truck and headed to Arkansas Children’s Hospital in Little Rock. I received a phone call from him later that night, wherein he told me that Adora had had a stroke at birth. A stroke?! My baby? I was emotionally gone, and my mind was blown. I had never even heard of babies having strokes. After all, the only people you hear of getting strokes are adults. About a week later, I was released from the hospital, and I headed straight to ACH to join my baby.
Adora was in the NICU at ACH. When I saw her, she had tubes everywhere, and the doctors were, truth be told, unsure if she would survive. We, however, knew our baby was going to pull through. Our faith kept us alive, and gave us hope. Our faith was strong, and it was strong in her. We were shown her MRI, and, my goodness, that was scary. Just because we had faith didn’t mean we weren’t terrified! The right side of her brain was gone, as well as a small spot on her left. She had a blood clot in her carotid artery, was diagnosed with brain damage, cerebral palsy, and epilepsy. We were completely overwhelmed by her multiple diagnoses, and cried… a lot. We were told that she might not be able to walk, talk, or do anything.
I finally, finally got to hold my precious baby girl two weeks later. We stayed at the Ronald McDonald House for three months. It was a blessing to be able to be there, close, and with other families. After weeks of praying, we were able to take her home. We were happy, I suppose, but also scared to death to take her home with no doctor or nurse. I did not sleep, instead watching her constantly to make sure she was breathing, feeding her, and giving her medications on time. All I could do was hold her and thank God that she and I were both alive.
Her tiny hands stayed in a fist in her ‘Joe Cool’ splints, and her eyes were locked to one side. She started occupational therapy and physical therapy when she was only three months old, and then started speech therapy when she was 18 months old, followed by hippotherapy at age 2. Adora was behind, but she did it! She even ended up walking! All of these different kind of therapies has made a huge impact. She still has to wear braces on her feet, and on her left hand, as well as needing to wear glasses. Later on, an eye surgery was scheduled, because the doctor said that her eyesight was very, very bad and that her right eye would wander. Now, she has to wear a patch over her right eye for two hours a day.
She is almost five now, and, far from doing nothing, she walks, talks, and plays! Her favorite things to do are dance and go to church. At church she opens the door, greets everyone, and hugs everyone. She even goes up to the very front, raising her right arm, and her left to the best of her ability, and give praise. She is so loving and kind-hearted.
Initially after her diagnosis, I felt helpless. I didn’t have anyone to talk to, as pediatric stroke isn’t something that many people are aware of. Luckily, I met other mothers on Facebook through The Bellaflies Foundation, and other online support groups. There, I found mothers going through similar obstacles, and we were all able to help each other in one way or another. Staying positive was, and is, key.
Be persistent in therapy. Raise awareness. Did you know that 99% of money for stroke research is for adults, and 1% goes to pediatric patients? Let’s join together to raise awareness for the parents of those who may become affected. Pediatric stroke knowledge could save your baby (even unborn baby) or child’s life!
Signs of neonatal strokes:
Hemiparesis or weakness on one side (chooses one side to do things instead of using both)
New-onset of seizures
(most common symptom of neonatal stroke)
• Blank staring
• Pedaling of limbs
• Jerking movements
In some instances, there are no outward symptoms of neonatal stroke. Unfortunately, the stroke may go undetected for several months.
As the child grows older, symptoms such as speech difficulties, imbalance, and numbness on one side of the body may appear; symptoms that are almost impossible to detect in newborn babies.
For more information about pediatric strokes, and to get your free awareness information please visit www.bellaflies.org. To support the lifesaving awareness, research, and education that The Bellaflies Foundation funds you can make your tax-deductible donation online, and/or support their annual Strides for Strokes family friendly event in Downtown Rogers on May 12th.