Each year Oriana & Catherine select a charity or family that is near and dear to their hearts to dedicate their efforts to.
This year they are honoring a young warrior, Lino Benso.
HOPE FOR LINO
Lino Gabriel was born on February 27th, 2019 with a severe brain injury. Despite having a perfectly healthy pregnancy, I ran into some trouble during labor and delivery. I started having fevers and severe contractions around 8pm on the night of 2/26 and rushed to the hospital to find out I was already 4 centimeters dilated. They began IV antibiotics, and I quickly got an epidural. I kept dilating 1 centimeter an hour and by 2am on 2/27 had begun pushing. 18 minutes later, Lino's heart rate dropped from the fetal monitor and my life changed forever. It took an additional 4 mins to get him out and another 4 -6 mins to resuscitate him. Everyone reassured me he was fine, but he wasn't fine and neither was I. Both of us were septic from a severe uterine infection that I somehow contracted and passed onto him. Not only was he septic and had swallowed his meconium, but he suffered from hypoxic ischemic encephalopathy (HIE), meaning during those 8-10 minutes with no heart beat Lino's brain received little to no oxygen and blood causing a multitude of lesions (or dead white matter) throughout his entire brain. While they tried to stabilize me, Lino was rushed to the NICU to begin a 72 hour hypothermia treatment to try to preserve his brain and internal organs from continued damage.
After 3 days of being kept at 92.3 degrees, an MRI was taken and showed that the worst damage was to the bilateral basal ganglia, which is the area responsible for your fine and gross motor skills. Essentially, parts of his brain had died from not getting enough oxygen/blood and the MRI that was taken helps to predict possible long term issues that may occur. Since being discharged from the NICU, Lino has begun to show signs of the brain injury, most of which is related to exactly what his MRI had shown. His fine motor skills that were affected include his mouth & tongue making it difficult to eat and his fingers & wrists making it difficult to open a flat hand or grab items. His gross motor skills affected include his arms & legs making it difficult to bend or extend and his trunk & neck making it difficult to hold his head or body upright.
His fine and gross motor skills are just the tip of the iceberg. Other parts of his brain were affected as well and he's had numerous diagnoses in just 5 months of life:
Failure to thrive
Cow milk protein allergy
Cortical visual impairment
Emotional regulation dysfunction
Temperature regulation dysfunction
The hardest part of a brain injury? The wait and see. The brain is so complex and it is very difficult to predict what the exact outcome will be. So, here are some of the diagnoses also likely or possible in his future:
Delayed visual maturation
ADHD & ADD
As you would imagine, we spend our days managing and minimizing the affects of his current diagnoses, while also preparing for any of the "what if's" the future might hold. And, of course, a multitude of medical conditions also means a multitude of doctor's appointments & hospital stays, medications, medical equipment, therapies, and specialized & adaptive everyday items. He sees a neurologist, neurosurgeon, neuro-ophthalmologist, gastroenterologist, physiatrist, pulmonologist and a plastic surgeon, which we travel to the Children's Hospital of Philadelphia to see. He goes for feeding & swallowing therapy, physical therapy, occupationional therapy, speech therapy, and vision therapy. He is routinely admitted for video EEG's to check for seizure activity. He's on medication for reflux and muscle tone. He currently has a nasogastric feeding tube and requires a feeding pump, but he will be getting a gastronomy tube placed in his stomach later this year. All of this equals co-pays, deductibles, commuting costs, plus the cost of adaptive or comfort items like clothing for his stomach tube or specialized strollers to help him sit straight. Not to ignore his tolerance for only 1 formula out of the 14 we tried, which is of course very expensive and not covered by insurance. Additionally, because of how extensive his care is I have not been back to work since his birth and we are living off one income. We've exhausted our savings and 401k, and any other resources we could think of. Granted, there are some state medical programs that Lino is a candidate for, but most, if not all, state or federal financial assistance depends on parental income and, although we do not make very much, we make too much because we are not below the poverty line and therefore do not qualify.
The expenses are extreme and we are now turning to all of you for the help we truly need. All we want is to give Lino the best chance at life, to maybe reduce some discomfort, and provide a nurturing home. Any support is beyond appreciated and if you can't donate please share! Thank you for taking the time to read our story