It’s your story every Sunday. Your courage, hope, inspiration, or ability to share your gift with the world.
But this time, on this day, a dozen Sunday Series on the books — we might actually be able to save a life.
The Sunday Series (12): Aiden’s Gift
Upon first glance, this is a story I wasn’t sure I wanted to tackle. But it might be the most important story you ever read.
A few months before she was to turn 18, Ashley Navitskis gave birth to Aiden James. It wasn’t where Ashley thought she would be in her life, learning she was pregnant just days before her 17th birthday, it was a shocking disappointment to her parents and to Ashley. And let me be clear, teen pregnancy is not the focus of this blog, no one is taking sides, I know it’s a touchy subject, but it’s what happened to Aiden that might just save a life. That is where I am going to take you.
Let me just say this, and this is where the entire story turned for me – when I asked Ashley the question how she felt when she learned she was pregnant – “terrified as any young teen mom would be. I was going to a be a single parent, still living at home. ” said Ashley. “But if you take the responsibility to have sex when you are a teenager, then accept the responsibility to be a parent.” A strong statement from a young lady still shy of her 20th birthday. Aubrey Navitskis, Ashley’s mom, explains her own emotions: “It was almost like we didn’t have time to think too much about her being a young pregnant girl, once it happened you deal with it. You have to move on and keep going, there’s nothing you can do to change what happened. We had to get over it pretty quickly because there was a baby coming fast.”
Fast forward to December 2nd, 2011… at 7 pounds, 10 ounces, Aiden James is born. I’ll say it again, his entrance into this world might just save a life.
From the very beginning there was something unusual. Ashley says Aiden was circumcised as a baby and barely let out a whimper. A short time later, when they were leaving the hospital Aiden was choking and turning blue, but the hospital staff said that could easily happen with a newborn and sent the family on their way. During his first month checkup in January the doctor took Aiden’s temperature with a rectal thermometer. Most babies scream in terror. Aiden did not move, complain or cry.
Yet for the most part Aiden acted like a typical baby, he loved to watch TV, he cried, he did almost all the things a baby likes to do, except he couldn’t sleep on his back, it would create trouble with his breathing. He liked to be held a lot, and he liked to fall asleep on Ashley’s chest. He always wanted Ashley.
At the two-month checkup Aiden received his first round of shots. Any parent knows it’s traumatic for the infant to have needles stuck all over his/her body. But Aiden didn’t really seem to mind, his body barely became rigid, or tense as the needles were placed in his skin. But then the nurses went to give him an oral vaccine and he immediately started choking. The doctor also noticed Aiden could not hold up his head very well, or move his arms and kick his legs like a normal two-month old. Doctor Myer said he had never seen a baby so happy and full of awareness, but unable to move the way he should. He decided it was time for a second opinion. An appointment was made with a neurologist.
It didn’t take the neurology team very long. They had seen Dr. Myer’s reports and after a difficult procedure to get an IV into Aiden and to extract blood for genetic testing they had a serious suspicion. But there was still one test to be completed, an EMG muscle test. But at two months old and with some muscle issues, the doctors said they could not put Aiden to sleep for the procedure, which would involve a series of shocks to his body. So they had to resort to giving him pain medications every 15-to-20 minutes, then shock his body, look for a response, and then repeat. Aiden was not responding, there was no reflex, except for his crying during a torturous 45-minute procedure.
As is so often with modern medicine, the testing told the story. And concern turned a corner to catastrophic. Aiden had a motor neuron disease, the number one killer of babies before their six month birthday… SMA – Spinal Muscular Atrophy. In Aiden’s case it was Type I, also known as Werdnig-Hoffmann Disease. A child with SMA Type I is unable to sit or stand without help. Swallowing and feeding becomes difficult and the child eventually loses the ability to swallow safely without aspirating, (choking or inhaling secretions and food particles into the lungs). But maybe the biggest problem is the weakness of the muscles used for breathing, those that help expand the chest and fill the lungs with air. It becomes difficult to breathe at all. Aiden was in trouble, the doctors said his testing showed this was fatal, he wouldn’t live to see his 1st birthday. They gave the Navitskis family a choice, try to prolong his life with a tracheostomy and feeding tube, or choose comfort care, meaning take Aiden home with pain medication and hospice. Ashley turned to her parents for help with a decision that had to be made that day. It was decided they would take Aiden home, keep him comfortable and wait for the inevitable.
Back at home a group of counselors and therapists would visit a few times a week and Aiden actually seemed to be doing pretty well. As the calendar turned to April the family was actually talking about planning a trip to the beach for Mother’s Day. But by late April things were changing. Aiden had episodes where he would stop breathing and turn blue. He needed oxygen and suction of his mouth almost every day, yet somehow Aiden would rebound from the procedure.
But on the night of April 25th Ashley says the family dog, Angel, did something strange. “She suddenly jumped up on the bed”, says Ashley, “Angel always slept in my parents room, but this night she wouldn’t leave my room. Angel walked over to Aiden, gave him a sniff and a lick and then went and lay down at the end of the bed and refused to leave.”
Morning came and Ashley’s father Adam and her sister Alyssa were off for a field trip to DC. Ashley decided to give Aiden a dose of morphine, since the prior three day period had been pretty rough. Then she lay down with Aiden like she always did and the two watched his favorite show, Tom & Jerry Kids. The hospice team was to visit later in the morning. But suddently there was another episode, Aiden was turning blue, Ashley was bouncing him up and down on her leg, which is what she would always do when Aiden started choking. But this time it wasn’t working. Ashley’s mom tried to suction not just Aiden’s mouth this time, but the back of his throat, it seemed to help, so Ashley and Aubrey put the oxygen mask on Aiden’s face. Aiden hated that mask, but there was no choice. Aubrey said whatever crying Aiden could manage sounded like a death rattle. The end was near.
Aubrey called her husband and told him to somehow find a way to get home from the field trip because as she painfully told him on the phone, “Aiden was dying.” She put the phone to Aiden’s ear so Adam and Alyssa, miles away in DC, could speak to him. Aiden, with an oxygen mask on his face and still on Ashley’s lap, was listening, he looked up at Ashley, looked over to Aubrey and closed his eyes. It didn’t feel like he was breathing, but Ashley said she couldn’t remove the mask, for fear he might still be alive, there might still be some hope. But on this day, hope had run its course.
On April 26th 2012, Aiden died in Ashley’s arms.
For any parent it is their worst fear and greatest pain. Devastating beyond belief. Ashley can barely speak about the entire experience, but her mom Aubrey says the pain was nearly indescribable, “how do you watch your child bury their child? And a grandparents love for that child.. I can’t even describe it. Knowing you can’t save your grandchild is heart wrenching, our hearts are broken, Aiden took a piece of each of our hearts. He was an amazing child.”
But Aiden’s mom made him a promise. Knowing he would pass on one day, Ashely told Aiden she would get her life back together. She had to drop out of high school when she learned she was pregnant and the family actually moved out of state. She promised Aiden she would go back to high school, or get her GED. Ashley did just that, she got a job, earned her GED credits, got her driver’s license and now has a full-time job at a local hospital. Approaching her 20th birthday, Ashley has already lived through life’s greatest tragedy. She is determined to rise back up and to make sure Aiden’s life makes a difference and share her lesson: “Everyone who has a child, love them, cherish them and never take them for granted, because not every day is promised”, says Ashley.
It’s a tough story to tell, a tough one to read, but I said it could save a life. Understand that 1 in every 40 people carry the gene which causes SMA. If both parents are carriers there is a 1-in-4 chance the baby will suffer the same fate as Aiden, and be diagnosed with SMA-Type I. There is a simple blood test which can detect the gene. If you are thinking about having a child, you should think about finding out if you are a carrier. Ashley and Aubrey believe Aiden was here to save the life of another child and if even one other life is saved, then Aiden’s story gains even greater significance.
Not that it doesn’t already. Although his body had trouble moving muscle, Aiden’s heart moved mountains and continues to do so even today. Sharing his story might change the life of another. It’s Aiden’s gift to the world.
Please go to www.fsma.org to learn more. You can also visit Ashley’s facebook page @ https://www.facebook.com/ashley.navitskis?fref=ts
Until next time thanks for taking the time,
Mark Brodinsky, Author
It Takes 2. Surviving Breast Cancer: A Spouse’s Story
Buy the book: www.amazon.com/author/markbrodinsky
For feedback on the Sunday Series, or if you have a story to share, you can send an e-mail to firstname.lastname@example.org
Please click the follow button at the top of this blog and enter your e-mail to be notified of new blog postings.