Charlie, Severe Neurologic Impairment Related to Prenatal Bilateral Anterior Circulation Ischemic Stroke

When we found out we were having a child our whole world changed. We began imagining what pregnancy and parenting would be like…a cute little belly and fun cravings. And then when our little baby came into the world, we imagined sweet smiles, watching her first steps, eventually teaching her all kinds of things.

Pregnancy looked a little different than what we imagined. I was sick for a majority of the pregnancy losing weight instead of gaining then right at the end swelling up like a balloon; I had what is called HELLP Syndrome. Because of this I was rushed in to an emergency C-section where my husband was not able to come in with me and I was not conscious for her birth. This was not at all how we envisioned welcoming Charlie Mae into the world.

At home we did not get the sweet smiles and coos we were expecting either. Our sweet little peanut cried all day every day. We were a constant presence at our pediatrician’s office. It wasn’t until Charlie was around four months old that we noticed some new behaviors. She began to develop a lazy eye on the right and would use her left arm but not her right. We decided to just check to be sure so we made an appointment at Upstate with a neurologist. That was the day our lives changed completely.

The neurologist said a lot of her behavior was concerning and it was possible our little girl had suffered a stroke and was having seizures. To pinpoint the extent and cause of the seizures, we were admitted into the hospital for a 12 hour EEG an MRI and a spinal tap to rule infection. We spent the night fussing and worrying while Charlie was connected to more cords than I could even imagine until it was time for the MRI and spinal. Then, the doctors came back with the results.

Diagnosis: perinatal stroke in the Parietal and Occipital lobes effecting the left and right side of the brain but more focused on the left. This is Charlie’s cause for her Cerebral Palsy.

We began traveling to Upstate weekly for the next few months. Charlie was put on a very high dose of Prednisone to decrease the swelling of the brain and end her seizures – and it worked! We were thrilled and so proud of our little girl when we were told her EEG was clear.

Charlie’s journey continued at the Children’s Hospital of Philadelphia (CHOP) where we meet with a team specializing in pediatric strokes. We still visit CHOP regularly to see the stroke team. They have helped us give Charlie the tools she needs to continue to improve every day. She uses a feeding tube to help her get all the nutrition she needs to grow and thrive.

We also visit a Pediatric Neuro Ophthalmologist. Charlie has had eye surgeries to help straighten her right eye which has exponentially increased her range of vision and has allowed her to be more successful reaching and grabbing items which she had not been doing at all until that time.

Today Charlie is a 5 year old ray of sunshine. She loves to spend time with her family. Despite being non-mobile, she really stays active! She enjoys riding her bike [which her grandpa adapted for her], swimming and going for walks. She really loves school where she gets to learn from her friends and peers in addition to getting all of her therapies she needs to improve all of her skills. She may not yet be able to say any words other than “Yea” but she sure does get her point across in her own way. She has a fabulous personality and her smile is contagious.

In Charlie’s day to day life, there is a lot of heavy equipment and a great deal of work on Charlie’s part. And every day she rises to the challenge. I have never seen a child that works harder than our little girl!

CMN has helped us with trips to CHOP – a real possibility long term. As one would imagine, these trips can be very costly. Without CMN, we would not have been able to pursue the best care possible for our child. We have also met other families through the CMN group who know exactly what we are going through and it has been instrumental in our ability to heal and become the best parents we can to our amazing little blessing, Charlie. She truly brings joy to every person who meets her. She is so loved and has the best sense of humor a little kid can have. Her heart is so big and she has so much love to share with the world.

I would like to thank you for any help you may be able to give the Children’s Miracle Network. Without their help, many children would not get the support they need to live their true best lives and we are so very thankful for them every day.

–The McNitt Family