The Amazing Story of Casey Barnes
Special Needs, Medical, Parenting, Complex, Chronic, Tools, Resources, Support
Casey Erin Barnes came into our life on April 23rd 2006. She was a few weeks early, but just 3 days from being full term (37 weeks). Casey came early, but not easily. Marty (Casey’s mom) had a uterine rupture. Some ruptures are really just tears, however this one split the uterus completely in half. When the uterus ruptured, Casey and her placenta left the uterus and floated in Marty’s abdominal cavity.
Luckily Marty and Tim (Casey’s dad) made it to the hospital very quickly. The doctors and nurses worked very fast to get Casey out. Based on the blood gas taken from her umbilical chord Casey went about 30 minutes with limited to no oxygen. The APGAR was 0 at birth, no breath, no heart beat. After 5 minutes the resuscitation team had a heart beat; after 10 minutes they had gasping breaths. Casey was taken to the NICU (and mom to the ICU) where she stayed for the first 2 months of life.
The official diagnosis of HIE (Hypoxic Ischemic Encephalopathy) was given. Casey has many side effects/complications. Casey has Quadriplegia CP (Cerebral Palsy). Casey’s CP is a stiffness in her arms and legs. The stiffness in her legs has lead to a deformation in her feet as well as a dislocation of both hips. The stiffness in her hands lead to cortical thumbs (pointing inward). Her arms are much looser than her legs, but still very stiff. In addition to CP, Casey also has a lot of her basic reflexes missing. Casey is not able to suck, swallow, gag nor blink. Without the ability to swallow Casey’s air way is in constant risk. Suction equipment is needed to remove secretions, and anything else in her mouth/throat, in order for her to breath. Also, without the ability to swallow Casey can not eat by mouth. All of Casey’s nutrients and calories come in liquid form through a G-Tube. Without the ability to blink, eye safety is another issue. Moisture is supplied often with drops and lube, and Casey’s eyes have to be covered when there is high risk for foreign objects near the eye. Casey also has moderate hearing and vision loss. She is legally blind, but the eye doctors believe with help she can eventually see. Her eyes work, she is just not able to comprehend everything she sees. The same can be said for her hearing. She hears some, and with hearing aids she hears a little better, but the loss is more about her brain not comprehending the sounds than it is about her ears not working.
Over time Casey has aspirated fluid into her lungs due to the lack of swallow. These aspirations led to a few hospital stays with very serious pneumonias that were escalated to Acute Respiratory Distress Syndrome – ARDS. The ARDS has put Casey into a category of lung and respiratory related issues as well. Even though she was not born with respiratory issues, they can still be considered complications of HIE, just less directly related. We add a new diagnosis to Casey’s list every 6-12 months.
There are many children with HIE, some not as serious as Casey, some much more serious. However, there is not a lot of options medically available to help a brain injury. The suggested (insurance covered) methods are really just to medicate and sit and wait. If the patient and family want to take a proactive approach (like Casey and her family) the cost is all out of pocket. Hopefully in the near future this will change. Some treatment options like Hyperbaric Oxygen Treatment – HBOT are available in the US, just costly. Other treatments like umbilical stem cells are not only costly, but not even available in the US. We truly believe that these procedures, as well as her many doctors, nurses and therapies have made such a huge improvement in Casey’s life. I just wish that these options were more readily available so that all brain injured children could have access to them.
Casey has many serious complications, and has had a very hard start to her life. Regardless of the challenge or the pain Casey has fought through it all. She is with out a doubt the strongest and most amazing child I have ever met. Doctors originally gave a very grim expectation for Casey. Some said she would never go home at all. Others said if she did go home it was most likely she would not see her first birthday. Casey has proven them all wrong. She has a huge, wonderful personality to go with her amazing will and strength. She may be disabled; she is definitely determined.