Alfie Evans missed numerous developmental milestones in his first seven months of life. Doctors told the family, despite some seizure-like jerking, that Alfie was simply “lazy and a late developer”, but in December 2016 Alfie caught a chest infection that caused seizures and was placed on life support. After admission to Alder Hey Children’s Hospital, Alfie’s parents, Tom Evans and Kate James, were told he wasn’t going to make it; however, he beat the infection and started breathing on his own. Alfie developed another chest infection and had to go back on the ventilator when he began having chronic seizures. According to doctors, Alfie is in a semi-vegetative state, and it is “in his best interest” to stop mechanical ventilation despite the fact he has no definitive diagnosis.
Alfie Evans’ parents fought the justice system and the hospital for months, but on April 23 rd the hospital removed Alfie’s water, food, and oxygen. Miraculously, little Alfie has continued to breath unassisted for 21 hours (as of this writing) despite doctors claiming he wouldn’t last three minutes. At some point during the 21 hours, Alder Hey replaced Alfie’s oxygen, although not the ventilator, so he is continuing to labor on his own.
On Monday, the 23rd , Italy granted Alfie Italian citizenship so his family could relocate him and remove responsibility from the British hospital system. Despite this move by Italy, Alder Hey and the UK judicial system refused to release Alfie from their so-called “care”. This hospital and these judges decided they were the judge and jury regarding Alfie’s life, and they arrogated to themselves the role of God and parent. This simply is not a matter of money nor a lack of care. A helicopter is on standby to take him to one of four hospitals in Italy; each has stepped up, willing to take care of Alfie. Judge Hayden and the decision-makers at Alder Hey are arrogant and drunk on the power of making life and death decisions. There is no other explanation for their reprehensible decisions.
In August 2016, two short months later than Alfie, I delivered our second daughter, Adalynn Junia. At four months, we realized Addie wasn’t tracking with her eyes and seemed to have plateaued in her development. We saw an ophthalmologist and Addie was diagnosed with Duane’s Syndrome, meaning she had no control over the muscle in her right eye along with a common symptom of Duane’s, the tilting forward of the child’s head instead of holding the head straight up. This behavior enables the child to see straight forward. We thought we had an explanation for some of her delays, and they would be resolved with eye surgery.
In the next couple months, Addie stopped growing completely and even for a brief time began to lose weight. We changed my diet as I was nursing, tried medicines, changed her diet, tried supplementing, changed her diet again, and eventually she stabilized. We thought this was a fluke; we had explanations for everything, remember? We assured ourselves she was “lazy and a late developer”. Just like Alfie. The spectrum for child development is wide as any parent knows; we are all acquainted with children who walk at nine months and children who don’t walk until two, and neither has a syndrome or long-term delay.
When Addie was nine months, my Dad, her family physician, took me aside and told me it was time to be worried. At nine months, Addie was still wearing 0-3 month clothes, could not hold her head up, could not roll over, could not pull up, and was not talking (she did giggle some). Essentially, at nine months of age my little Addie just laid in my arms like a 6-week old infant. Enough time had passed that the “lazy and a late developer” reason was no longer applicable, and by then the diet changes should have helped her catch up.
That week we scheduled appointments with pediatric neurologists, developmental pediatrician, behavioral pediatrician, geneticists, and therapists of every variety. Appointment after appointment we were told, “Something is wrong, but we don’t know what.” We received no definitive diagnosis. Again, just like Alfie.
After her first birthday, Addie began to make some developmental strides almost overnight, holding her head up, rolling over, attempting to crawl, and was even able to forgo eye surgery! Praise the Lord! But during the fall of 2017, Addie struggled with infections and soaring temperatures. Eventually, she contracted a severe case of croup and was hospitalized with border line stridor and temperatures nearing 105, “one of the worst cases of croup” the pediatric surgeon on call had ever seen. Despite one of the worst flu seasons in a decade, we were rushed through the ER and admitted into the hospital (those who have experienced crisis situations know this isn’t a good sign!) where the wonderful staff at Spartanburg Regional Hospital did everything they could to reduce Addie’s infection and temperature. She came home the following day but continued to struggle with numerous infections and dangerously high temperatures for the next couple weeks. Just like Alfie.
As 2018 began, Addie’s health and development began to even out. We returned to see all the specialists and over and over again we were told, “Nothing is wrong with Addie. We can’t explain it.” Sweet music to my ears. Addie has continued to catch up and surpass her peers. She’s the tallest baby in her Sunday School class now, has “an overwhelming need to communicate” per her developmental pediatrician, and eats incessantly.
You see, my Addie was Alfie. As I’ve learned of little Alfie’s plight, I can’t help but superimpose my Addie’s journey over his, and I’m nearly brought to my knees by the similarities. I am aware there are significant differences (Alfie has been in a “vegetative state”), but I’m overwhelmed with gratitude for the doctors, nurses, specialists, and therapists who never, not once, told me what Alfie’s parents heard; instead, by their words and actions, I heard that my child’s life was worth fighting for. Despite having no answers, despite set back after set back, and despite all the money being spent, we always knew Addie’s life was valuable. Even when faced with the possibility of raising what could have been a six-week old infant for the rest of my life, I threw my arms open wide and embraced her because HER. LIFE. IS. VALUABLE. No one can tell me any different. God bless Tom, Kate, and little Alfie. I pray God saves Alfie from the clutches of death and that his life shines a light upon the darkness and evil of Alder Hey.
Originally, from the indignation and anger that has risen up in me, I wanted to beg God to rain judgement and shame down on Alder Hey Children’s Mortuary, but I/we need to pray for His mercy and His grace to save their souls so their blind eyes would be opened to the truth about the value of life. We also need to pray for America as we slide down the same slippery slope of death.