As many of you know, Brooklyn went to Cincinnati Children’s Hospital this week to see a team of doctors and therapists for diagnostic purposes. While she has had continuous symptoms since around 4 months old and began therapy and seeing specialists here at 8 months old, they have been unable to reach a diagnosis where we live. Upon recommendation from our pediatrician, we packed it up and made the 7 hour drive to Cincinnati on Sunday.
The trip was long, the tests were no fun, and we returned home exhausted. But we have answers. And we LOVE Cincinnati Children's Hospital!
On Monday, Brooklyn had MRI and MRS scans of her brain done under anesthesia. They also drew blood for lab tests while she was unconscious (thank you!).
On Tuesday morning, she got up at 4 am for a sleep-deprived EEG. The EEG is a painless procedure but is no fun for a girl who does not like things stuck to her head. Fortunately, we had a great team who got the procedure done quickly and without incident (but not without a few tears, sadly enough).
Tuesday afternoon, we met with a team of neurologists. We were at the hospital from 3:00pm until 7:30pm... they were very serious about spending quality time with our girl. They observed her playing, walking, babbling, looked over her medical history, read us results of testing, did a physical exam on her, checked her reflexes, measured her head, etc.
She may have gotten so bored that she invented her own game with the empty laundry hamper... pushing it around the doctor's office.
On Wednesday morning, Brooklyn met with a speech pathologist who assessed her speech and feeding skills and made recommendations for future treatment.
The doctors and nurses at Cincinnati Childrens were AWESOME. We were so pleased with every single professional that we dealt with. They were kind, compassionate, thorough, patient, and explained things extremely well. Even the parking lot attendant stopped to ask how we were all holding up as we exited the hospital on Tuesday. Our experience there could not have been any better.
In three days, we received answers that we have been seeking for almost Brooklyn's entire little life. They diagnosed our sweet girl with cerebral palsy, with the complication of associated epileptic seizures. If you are like me, you probably don't know much about cerebral palsy, and you might picture a child in a wheelchair and wonder how that could fit with Brooklyn.
You can keep reading for a summary of the information we received. Granted, it is a summary, but it is still rather lengthy. You've been warned.
Cerebral Palsy (CP) is an umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development. It is not genetic or hereditary.
CP is caused by damage to the motor control centers of the developing brain and can occur during pregnancy or childbirth. Typical causes include problems in intrauterine development, birth trauma during labor and delivery, and lack of oxygen to the brain upon birth. Between 40-50% of children with CP were born prematurely. Because premature babies have underdeveloped organs, they are more susceptible to brain damage.
As they explained to us at Cincinnati, Brooklyn most likely had an intrauterine stroke that led to her premature delivery. Because she was tiny and her lungs were underdeveloped, they could not get enough oxygen to her brain fast enough. Anytime that your brain is deprived of oxygen, damage occurs. We are fortunate that we were surrounded by a fabulous NICU team who was able to keep the damage to a minimum.
All types of CP (and there are several!) are characterized by abnormal muscle tone. In Brooklyn’s case, her tone is abnormally low, giving her a slouchy/floppy appearance, slower reflexes, and coordination issues. Some classic symptoms are unsteady gait, problems with balance, sensory issues, etc. CP symptomatology is quite diverse and can range from clumsiness on the mild end to severe impairments on the other. Fortunately, right now Brooklyn falls closer to the milder end of the spectrum.
Resulting movement difficulties can also be accompanied by disturbances of sensation, depth perception, communication ability, and sometimes cognition. It can also be accompanied by epilepsy in 40% of children with CP. Brooklyn falls into that 40%.
Symptoms of CP are typically first noted when the baby is 6-9 months old and begins to mobilize. Asymmetry of limb usage and/or gross motor developmental delay is typically noted. Other symptoms noted can be epileptic seizures, communication disorders, sensory impairments, and learning disabilities. Brooklyn had all of those symptoms.
Speech and language disorders are common in people with cerebral palsy. Due to abnormal muscle tone, control of the oral-facial muscles becomes quite difficult. Also, feeding, biting, and chewing are sometimes difficult tasks as well. While in Cincinnati, we learned that Brooklyn does not chew or swallow properly.
CP is typically diagnosed through a physical examination and detailed history of the patient. CP has no known cure, but it can be treated. Treatment for CP is a lifelong multi-dimensional process focused on preventing the brain damage from prohibiting healthy development. Because the brain is not concrete in its development up until approximately the age of 8 years old, early intervention has proven quite successful in milder cases, such as Brooklyn’s. The brain has the ability to reorganize and reroute many of the signal paths that have been affected by the damage, and the earlier it has help in doing that, the better the prognosis. Treatment in Brooklyn’s case so far has included physical therapy, speech therapy, and occupational therapy. In addition to continuing those therapies, Cincinnati would like her to begin anti-seizure medications and feeding therapy (she eats well but chews and swallows incorrectly, choking quite often).
The prognosis for CP varies greatly depending on severity. The intellectual ability of the child is often not known until they enter school, and can vary from genius to impaired, just as in the general population. The ability to live independently also varies with severity, and is more likely in cases where the person can ambulate and self-feed, both of which Brooklyn can do already. In most cases, people with CP have a normal life-expectancy. Many go on to become successful spouses and parents.
All in all, cerebral palsy doesn’t always cause profound impairments. Some children may require therapy and be slightly disabled, while others may be confined to a wheelchair for their entire lives. We are quite fortunate that Brooklyn is on the mild end of the spectrum. We don't know yet what the future holds for her or what she will accomplish. She will be in physical therapy for the rest of her life. She has, however, already exceeded expectations, and we are hopeful that will the proper medical care, she will continue to do so.
Yes, we are sad. Yes, we will struggle with this. But we are truly confident that God has a plan for little Brooklyn. And I have honestly seen God's heart through her more clearly than ever before. He has repeatedly worked out even the smallest details in taking care of her and guiding this journey. This is the end of the seeking chapter, and the beginning of another chapter entirely. But God is good, ALL the time. Even when facing a scary diagnosis. He is still good. And He loves Brookie even more than we do. Our prayer is that she turns the world upside down for Him one day.
Thank you to the awesome doctors and nurses at Cincinnati. Thank you to Cincinnati Children's Hospital for the free tickets to the Zoo. Thank you to our friends, family, and church family for your awesome support and prayer. Thank you to Gram-B for driving, and to Mimi for entertaining. I could not have made that trip without two grandmas! Thank you to Mariott for the discounted rate and for accomodating us. And thank you to our pediatrician and the team of therapists here who got her started on therapy so early and pushed us to keep seeking answers. Thanks to all of the other people who I'm sure I've forgotten in my sleep-deprived state. We were truly overwhelmed by the love and support we received, and are humbled and thankful. We love you all, and appreciate you loving our girl too. This is a new beginning. Please continue to pray for Brooklyn and love on her. Your support is invaluable.
