“Eli was born neurotypical. At 5 months old he sustained a traumatic brain injury (TBI) due to Shaken Baby Syndrome (SBS) at the hands of his babysitter, who was a family friend. Yes, we knew her.
I was at work and received a phone call saying, ‘Eli is asleep but kicking his feet and won’t wake up!’ I called the ambulance since the sitter had not and left work immediately. I called my mom who was an LPN and told her to meet me at the hospital. I called my (then) husband and had him head to the hospital while I went to the sitter’s house to meet the ambulance. I called my sister to also meet me there and get my older son from the sitter so he wouldn’t be afraid. I was petrified by what she told me, but totally confused. He had been fine just a few hours before. He was a little cranky from teething, but I told her to call me if he was super cranky and I would come pick him up.
When I got to the house the ambulance had just arrived. Eli was not only kicking his feet, but in actuality, was seizing with his eyes rolled back in his head. The EMT made a comment I’ll never forget.
‘I’ve never seen anything like this. I have no idea what is going on.’
It did not give me any confidence in their abilities as I climbed in the ambulance with my son.
He was taken via ambulance for continuous seizures to our local hospital which was not equipped to deal with the severity of his injury in a child so small. He was life-flighted to our local children’s hospital. It was terrifying. Eli coded twice on the flight and went immediately into a 9-hour brain surgery to treat him for a subdural hematoma on the left side of his brain. He had a craniotomy, which is where they remove part of the skull to relieve pressure and they cleared out the blood that was building up. He was placed in a drug induced coma to help with seizure activity and to help keep him calm while the swelling and fluids went down. At this time, he had two shunts to help with swelling and fluids. After his surgery, we were told to call all of our family in to say goodbye, because his chances of survival were very slim. Shortly thereafter, police from our hometown also showed up to question us.
‘The doctors have ruled his injury as abuse.’ What? I was in shock.
Our entire family (parents, step parents, aunts, and some of my siblings) were with us for the weekend. The babysitter was actually also present, because until the police showed up, they had not mentioned the words, ‘child abuse’ to us. We were floored. The fact anyone could think we had hurt our son was devastating. It had taken us over a year to get pregnant with our first son due to previous health problems. We were told we would never have another one, so when I got pregnant with Eli it was a wonderful shock…and now someone was suggesting we had hurt him. The babysitter had left to go shower or eat (I can’t recall) and my dad said, ‘DO NOT come back,’ because we knew it had not been myself or my husband who had hurt Eli. We knew he was fine when we left him that morning. And my cousin, whose child was kept by the same lady, saw him that morning and knew he was fine.
For 6 weeks he was kept in a drug induced coma. During this time he went septic due to a duodenal perforation. They are honestly not sure if the tear was due to physical trauma by the babysitter or if it was sustained during life saving efforts while on the life flight. They had to repair the perforation 5 different times because each time they sewed him back up, it would rupture again due to swelling and infection. The final time they left his abdomen open, placed a mesh barrier, and put a wound vacuum on it to remove infection and promote healing from the inside.
We felt so many emotions while Eli was in a coma. We were exhausted, I was separated from Evan for the very first time, and my husband had to go back to work so we could pay our bills. My family rotated staying with me so I was never alone. My mom and my step mom would stay with me while my mother in law and sister would watch Evan. We had my daddy, who is a pastor, as well as my mom’s pastor and former pastor come in with prayers for Eli. He was put on so many prayer lists, our local churches got together and had a benefit for our family to help cover losing my income. During those 6 weeks time, a gastrostomy tube was also placed due to his neurological status and their doubt he would recover and have the cognitive ability to eat on his own. It was crushing.
Once Eli was brought out of the coma we were told he would only ever be in a vegetative state and that he would have a very limited life span. They recommended institutionalization at that point. ‘Put him somewhere to avoid the burden he will be.’ And they actually went as far as to get him a spot in a facility without even asking first. I was livid, and at the same time heartbroken. I asked them if this was really the way that they prepared people to take their children home?? Tell them it’s hard and they can’t do it?!
Obviously I declined that option. I was a very young mother at that point (21), and medically ignorant. But that did not dissuade me from telling them, ‘We will be taking Eli home, and we will give him the very best quality of life we can for whatever time he has.’
I was terrified. What if I couldn’t do it? What if I screwed up and Eli paid the price? How would it effect Evan? How would it effect my marriage? How would we balance life, his care, work, and another child?? I had to leave my job because Eli needs around the clock care. He had so many appointments and we had to travel for all of them.
It did end up effecting Evan profoundly. But I don’t think any of it was in a negative way. He was very concerned and very involved with Eli from the beginning. He wanted to be a part of everything. My marriage did end, we went through a very traumatic occurrence and sadly marriages often fail in the wake of trauma. I was so wrapped up in taking care of my children and Eli’s medical needs, I didn’t have time for anything else, let alone him.
We began seeing a variety of specialists at the hospital and traveled several times a month. One of the major issues that has always been a problem is seizure activity. Eli has several different types of seizures (absence, focal, myoclonic, atonic, and tonic clonic). He also has what his doctors refer to as ‘neuro storms’ which are basically static activity all over his brain. This is especially strong at night when he’s sleeping. He has global brain damage which effects every part of his life. Even though he is now 16, Eli is at the cognitive level of an infant.
Eli is fully dependent for all of his care. He doesn’t have head or trunk control. He doesn’t speak, due to his brain damage. He has quad spastic cerebral palsy (meaning all four extremities are effected), he has laryngomalacia (folding airway, exacerbated by his CP), he has central sleep apnea (where the brain doesn’t communicate to the body to take breaths), he has obstructive sleep apnea (due to CP and laryngomalacia), he has scoliosis (due to CP and poor muscle tone), he has cortical visual impairment (CVI) and is legally blind, he has osteoporosis (due to lack of movement and seizure medication use), he has acquired poly cystic kidney disease (PKD) due to seizure medication use and osteoporosis), neurogenic bladder, hip dysplasia (due to CP, poor muscle tone and osteoporosis), and a myriad of other smaller diagnoses. It’s as overwhelming as it sounds.
Due to the fact he was tube fed and has such massive amounts of muscle spasms he was considered failure to thrive until age 8 when we had a baclofen pump implanted to help with spasms. He has spinal rods to prevent organ compression (due to scoliosis and CP). He’s had multiple hip surgeries (hardware had to be removed bc of bone condition due to osteoporosis) and had to have the entire top of his femur removed to avoid contact between his hip and femur and hit with radiation to prevent new growth. He’s had 47 major surgeries, countless minor procedures, he sees 25 different doctors on a regular basis, he takes 11 chronic medications, and has multiple pieces of medical equipment for us to take care of him.
While all of the appointments, equipment, and doctors are hard to balance, the absolute worst part of the whole situation is – it didn’t have to be this way. This didn’t have to happen.
Had the sitter called us when she was ‘frustrated’, we could have picked Evan and Eli up and taken them home and Eli would still be the person he was born to be.
In spite of all of his medical issues, Eli is relatively healthy due to great care from our physicians and diligence in getting him preventative care to keep him healthy.
Once I took Eli home I began researching every condition he had, changed hospitals to get better care, even moved to another state to have more immediate access to his healthcare team. I began searching out online support and resources and have built a wonderful network of similarly effected families and medically complex children. The parents I’ve met in Yahoo groups (it was the early 2000s and groups were hot) will never know how much they helped me. I learned far more from other mothers fighting the same battles than I ever learned from any medical professional. Some of those ladies are still a very vital part or our lives. They helped me learn not to take no for an answer, they taught me to fight, they showed me it was ok to question doctors, to research and most importantly, to never give up.
Eli’s abuser was never charged, never spent one night in jail, and has been able to live her life unencumbered by her choices, while we deal with the aftermath each and everyday. I’m very disappointed in the city and county we lived in and where Eli’s abuse occurred. I have been in touch with them multiple times in the last 16 years and have still not been able to have any action taken against his babysitter. At this point they tell us, ‘I’m sorry but most of his file has been lost due to Katrina and other catastrophic storms in our area.’
One specific assistant DA actually told me, ‘This case is none of your fu@&ing business, you aren’t the victim here.’ I can’t recall any other specific conversations. I had so many. I do recall sending letters to the attorney general of the state and the governor and being told they couldn’t help me, the charges were filed at the discretion of the county.
I want to see her sitting behind bars, the LEAST she deserves for all she took not only from Eli, but from our entire family. She should have to spend the time she has left in solitary confinement since she locked my child’s voice and his life away from him. Why doesn’t she deserve the same? Why is my son’s life worth less than hers because she’s an adult? Because she can spin lies and he can’t utter one word due to what she did.
We strive to give Eli a full and happy life and we travel a lot with him to give him all the experiences we can. He’s the center of our family and so very loved, not only by Mama and Billy (his step father who raises him), and big brother Evan, but also our extended family and friends who have become family.
If something good could have come out of this, it’s we now work extensively with other families who are effected by child abuse in general and Shaken Baby Syndrome specifically. I mentor other families who are dealing with the same things we have been through. I admin an online group specifically for non-offending birth parents and I helped co-found a group called ‘The Blue Ribbon Initiative’ with a fellow birth mom Kari Egerbrecht. We have made a Facebook page for the group and are working towards building our numbers to help contact state representatives in all 50 states. We are working towards harsher child abuse penalties across all states and helping push for a nationwide child abuse registry (much like the current sex offender registry). We need to make child abuse convictions and time served more the norm than the exception for offenders. We need to push for judges to stop giving these monsters just a slap on the wrist for altering and ending the lives of our most vulnerable population.
For anyone who is in similar situations I say hold on to your faith, because you will need it. Find people who have been in similar situations because until you have walked this path you honestly have no idea of the magnitude of emotions you will deal with and how quickly they can change. We know your struggles, we know your pain, and we can help you work through them.
As a mother you always want the very best for your children and you have high hopes for them. I would love to say I want Eli to be fully healed, to live a ‘normal’ life where he can function on his own and be healthy. But the realist in me knows it’s highly unlikely Eli will ever progress past the point he is now. And it’s highly likely I will outlive him. But while he’s my forever baby, I can guarantee he will have the absolute best life possible for him. He will never want for love, attention, and experiences. He will never want for family. He will never lack the best care we can give him. He is my joy.”
This story was submitted to Love What Matters by Tiffany Clark. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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