Leiland is a Pediatric Stroke Survivor. He has many diagnoses due to having a stroke in utero. He is Intellectually Disabled, has Hemiplegia, Cerebral Palsy, Major Neurocognitive Disorder, without behavioral disturbance, with moderate severity (ICD-10 F02.80), Specific Learning Disorder with impairment in reading, with impairment in word reading accuracy, with severe severity (ICD-10 F81.0) as well as Specific Learning Disorder with impairment in mathematics, with impairment in accurate math reasoning and calculation, with severe severity (ICD-10 F81.2). He does not understand certain social cues or sarcasm. Despite all of this he is an amazing young man.  So lets start at the beginning of his story…….

Leiland Dabney Watkinson was born April 24, 2006 at 2:19am. He was 5lbs 14oz and 19 ½ inches long. He came via emergency c-section after 12 hours of labor. Leiland’s heart rate was low that is why the doctor decided to go ahead and operate. Leiland came out with the umbilical cord wrapped around his neck. All of his initial testing was goo when he was born, but when he went into the administration nursery he started having apnea and seizures.  Leiland was then sent to the NICU and was intubated with lines in his belly button and put on breathing tube. He was administered antibiotics & antiviral medication. CT scan, EEG, ventilated, cannula were done as well as a spinal tap.

April 25, 2006: Leiland continued to have seizures and was put on Phenobarbital(heavy dose) CAT Scan, EEG were done

April 26, 2006: Leiland came off the ventilator briefly went back on at 12:15am EEG, MRI, paralyzed and sedated twice

April 27, 2006: Results of the MRI, Doc Taylor not pleasant. Antibiotics were stopped

April 28, 2006: Good Day!!!! Extubated, pulled arterial line and cannulas. First night time feeding with a bottle. First poo.

April 29, 2006: Leiland gets his first bath, took another poo. Bottle feed 10cc. Mom get to help with bath!

April 30, 2006: I get to change first transitional poo diaper. Leiland pees through clothes & blankets. Temp dropped. Ate 15cc and at 1:10am I got to feed him for the first time. 30cc

May 1, 2006: Antiseizure medication is administer by moth instead of line. IV is taken out. EEG done

May 2, 2006: Leiland’s original due date. He has a hearing test and passes with flying colors.

May 3 & 4, 2006: Both days the nurses and doctors monitored Leiland to make sure he did well on his own so that he would be able to go home.

May 5, 2006: Leiland Finally gets to come home. Discharged at 12:30 pm

This was Leiland’s timeline his first 12 days in the world. I did not get to hold him until he was 4 days old. When I knew that he would be going home I had asked his neurologist at the time was his life would look like, what was next, what else could I do? His response….. take him home and love him. There were no answers to my questions, no one could tell me what was to come next. In all honesty Leiland wasn’t ever expected to walk, talk or to really be able to function.

So when he was 4 months old I started him in early intervention services. Of course, he didn’t hit the milestones like “normal” kids did. Every small progress was a victory in my book. Leiland didn’t walk unassisted until he was 2, wasn’t fully potty trained until 5. It also took forever to get rid of the pacifier due to it being oral stimulation for him as well as a soothing thing.  Over the years Leiland would still be on medication to control his seizures. He had numerous EEG’s. He also had gait testing on his upper and lower extremities, Botox and phenol injections in his right side. They were first done when he was awake and then once that didn’t work, he would be sedated to be able to pinpoint the exact spots where he needed to have the injections. They worked for a while until they no longer did, and it wasn’t worth putting him through all of that for the results not to last like they should.  Leiland has had surgery on his eyes to tighten the muscles, his adenoids removed, tubes in his ears(2x), heel lengthening surgery and an arch created in his right foot. He has also worn numerous different types of braces for his right arm and leg. He had GI issues until he was a teenager.  Did I mention he’s had severe asthma and allergies too?  When he was younger, he was sick a lot, at one point he was on a steroids and antibiotics for months because he was always prone to getting upper respiratory infections. It seems like the only thing that wasn’t affected by the stroke when he was younger was his heart. We only saw a cardiologist once. But we saw Neurologist, Endocrinologist, Pulmonologist, Allergist, ENT, Gastroenterologist, Ophthalmologist, Orthopedic Surgeon, & Rehabilitation Specialist every 3-4 months when he was younger.

When Leiland was around 5, I took him to Children’s Hospital in DC, there was a doctor there who specialized is Pediatric Strokes. I was hoping to get more answers. They ran a few more test we found that Leiland has the MTHFR gene mutation like I do. So, he must take extra folic acid and B12. But when I asked her about the stroke and why it happened, she said “It’s like a car accident, sometimes it just happens.”

Later, I would take Leiland to Shriner’s in Philadelphia, PA to get a second opinion on his right hand. At this point they want to fuse his wrist when he is fully developed. I am trying my best to avoid this. So, we went for a few years, but the end result was this doctor saying the same thing and I decided that I wasn’t driving that far of a distance for a doctor who was insulting.

As of today, Leiland sees is Rehabilitation Specialist, Ophthalmology both once a year, he sees his neurologist twice a year through telehealth. His pediatrician for yearly checkups and we now go to UVA twice a year to his Pulmonologist.  

WHO is Leiland?

First off, Leiland’s name means protective, and boy is he just that. He is a young man with a heart of gold. At times, like most of he has trouble controlling his temper, but that’s to be expected when the left side of your brain is damaged. He LOVES MUSIC, as well as movies. He can piece all the Peter Pan movies and TV shows together so that it all makes sense on how they are all connected. He loves Marvel and getting comic books every month from his Uncle Michael. Leiland is an amazing big brother, especially to his youngest brother TJ (he’s almost 2). We call Leiland the baby whisperer. He has BIG DREAMS.  Leiland is a great many things, but he has his quirks too. He doesn’t understand sarcasm and certain social cues, so you must be patient with him and sometimes guide him with interaction. Overall, he is a well-mannered young man, who does the very best that he can. Once you meet him, you definitely will never forget him.