Kane Wyatt Edwards was born at a healthy 8 pounds 1 ounce on September 28th, 2017 in Texas, USA. He didn’t really cry, just let out a little squeal.
He was perfectly healthy and after a 3 day, 2 night stay in the hospital, was released to go home. His first night home was uneventful, in fact, he slept throughout the night. His parents, Madison and Dalton didn’t think much of it until the following day. They realized that he hadn’t really been awake since birth.
Kane was very hard to wake up when it was time to eat. He didn’t take much from the bottle, in fact, he only ate about 2 ounces in the span of 12 hours or so. On Sunday night, they figured they’d just play it safe and took him to the emergency room at Medical City Arlington.
When they arrived and explained why they were concerned. His ER team took Kane into a room and the only thing Madison remembers is one of the nurses starting an IV in his little hand.
Everything after that is a blur. The ER doctor told us that they believed he had an infection of some kind so they were having Teddy Bear Transport from Cook Children’s come and transport him to their NICU.
They put their sweet, tiny baby boy in the ambulance. Once in NICU, they almost immediately started a spinal tap and Kane didn’t even whimper. This was heartbreaking for Dalton and Madison to watch. They placed a feeding tube in Kane’s nose to get some food in his belly and hooked him up to all of the monitors. The next couple of days consisted of a lot of tests and unanswered questions.
His team ruled out any infection pretty quickly. Kane had an MRI and an EEG, both of which, we were told, were consistent with a chemical imbalance in his brain and they believed he had Genetic Epilepsy. A few days later, Madison and Dalton were told Kane had a very rare genetic disorder called Non-Ketotic Hyperglycinemia or Glycine Encephalopathy.
It was explained to Madison and Dalont in such a way that they assumed they would be losing our newborn son, soon. They were told that Kane would soon start to have seizures and then would stop breathing on his own and would have to be placed on a ventilator. They were told that he would have to have surgery to place a feeding tube directly into his stomach from his abdomen. They were told not to expect much quality of life, as most children with this disorder do not make it past the first few weeks of life and that if he did, he would never walk or talk and that he would never go to a normal daycare or school. They were told their son would have severe developmental delays, such that, he would never really be able to do more than a 6 week old baby.
They were told that there is no cure for this disorder but there are some medications that can be used to try to control the overproduction of Glycine and hopefully allow him to be more alert.
What a meeting. Afterwards, Madison and Dalton held Kane and cried. They cried as if he were already gone, because that’s how these doctors made it seem.
However, just a day after starting the medication, Kane opened his eyes. He rapidly became much more alert and he started taking his feeds by mouth, first just a little, and then a couple days later, he was taking full bottles! His breathing was normal and he was not showing any signs of seizures! A week after receiving his diagnosis, he was doing so well that they sent Kane home with NO FEEDING TUBE! All of the doctors were so surprised that he was doing so well.
Kane is now a beautiful three year old. His parents celebrate all of the milestones that they said Kane wouldn’t meet, they celebrate all of the little (and big) things that they have seen him do over the last three years. They celebrate that he has proved all of his doctors wrong in so many things!
They celebrate their fight through NKH, epilepsy, developmental delay, many medications, many hospital admissions, many ER visits, sleepless nights, endless days, tears, crippling fears, and everything else that they’ve endured. They celebrate their little warrior, their bumblebee, and their hero.
