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Meghan King Edmonds is living her worst nightmare.
“From the minute he was born I knew something was different with Hart,” Meghan, who welcomed Hart and his twin brother Hayes in June 2018, wrote. “The nurses struggled to straighten his legs to measure his length. He suckled hard, shallow, and often until I bled and he spit up black.”
When he couldn’t see his hands or his eyes stayed crossed for too long, she took him to a pediatric ophthalmologist. They had visits with a chiropractor and cranial sacral therapy. She would stop at nothing to find out what was wrong.
“I just knew,” Meghan admitted. “I told our pediatrician—she said he was fine. I begged for a neurologist referral and when I got it—he said he was fine. I then begged for a neurologist who specializes in Cerebral Palsy (I jumped through hoops to get this appointment, so many hoops) and she said he might be fine. I then begged for an MRI.”
“I sat at a table with my husband for an hour as we waited for Hart to come out of the MRI. Tears gushed from my eyes as I blankly stared at the cars on the highway—but I wasn’t crying,” she recalled in her blog post. “My husband asked me what he could do. ‘Get me a Coke.’ Those tears were for a lot of things, but mostly the unknown and mostly Hart.”
Her gut had, unfortunately, been correct. Three days after the exam, their neurologist called.
“Hart has minor Periventricular Leukomalacia on both sides of his brain (namely the white matter), but more so on his right,” Meghan revealed. “She said that this explains all of my concerns: the rigidity in his muscles, the (somewhat) delayed physical milestones, the lack of fluidity with arm and leg movements, the stiffness in joints, the weakness in his lower back, the somewhat favored use of his right side. She told me this mainly occurs in premies and since he was not a premie (he was born at 37 weeks gestation) she believes this damage somehow occurred ‘a couple months before he was born.’ She explained that he is at risk for being diagnosed with Cerebral Palsy and will be monitored.”
“Hart has irreversible brain damage, it’s called PVL,” Meghan continued. “Like I said, I already knew.”
Her husband, on the other hand, was surprised by the diagnosis. After she called him, she individually called family members and enrolled Hart in a therapy program he had previously been denied form “due to only have very minor” developmental delays.
“That night Jimmy and I went out to dinner for the first time in weeks,” she revealed. “I explained to Jimmy how we are not somehow compromised or punished for having a child with special needs (whatever that may or may not mean!), we are BLESSED. I will go on about this another time but just know that I do not see his diagnosis as anything but a gift: we were chosen to take on this special person. I truly feel as if we’ve doubled down and won the underdog hand. Truly.”
Today, Meghan, who also has daughter Aspen, is remaining as positive as she can.
“I pray for a miracle and I grapple with how to navigate his life,” she wrote. “This is a heavy challenge as a mother: where do we go from here? This is where: one foot in front of the other.”