‘They didn’t stay because he was ‘lifeless,’ leaving Jeffery with the nurses and machines for company. I knew I had to be there for him.’: Aunt details caring for Shaken Baby Syndrome survivor

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Disclaimer: This story contains details of child abuse which may be upsetting for some. 

A Troubled Beginning

“Jeffery’s story begins while in utero. He was conceived by natural means to a young couple. His birth parents were unprepared and not, by any means, interested in becoming parents. Abortion was mentioned but they decided to continue with the pregnancy. I am Jeffery’s maternal aunt. I was there supporting my sister emotionally through the pregnancy while she struggled with her mental and physical health due to her poor decision making. My sister ended up in the hospital at one point where she was septic due to a kidney infection. She refused treatment and repeatedly stated she wished she would die and that the baby, Jeffery, should die too.

Due to her wavering mental health and the father’s drug problem, our family insisted she live with my mother and grandparents after the birth. Jeffery was born a big, beautiful, healthy baby weighing 9 pounds 12 ounces. He spent a short time in the NICU due to defecating while in utero, but had a clean bill of health and was sent home the following day. Jeffery was a very quiet baby. I did live 45 minutes away from my grandparents’ home, so I only saw him a handful of times in the first 2 months of life. It is to my understanding my sister spent most of the time sleeping and my mother and grandmother were left to care for Jeffery.

baby boy sleeps peacefully with binky in moth
Courtesy of Amanda Hall

The birth father was around occasionally; when he was there, he often caused issues in the household. This led to my sister moving out and taking Jeffery with her to live with the father, his dad, and his grandparents. They lived in the basement next to the furnace and water heater. Jeffery did not have a nursery. He didn’t even have a crib. He only had a little rocker chair in the corner of the room. Photo evidence of the poor living conditions would be brought to light during the trial in the following months. During the month Jeffery was living in these conditions, there was very little communication between my sister and the family. I did not see Jeffery for a whole month due to her living situation. I had reached out, offering her a safe place if she and Jeffery were in need. She simply did not reply.

Placed On Life Support

On September 5th I received a photo, in a text message, of a baby hooked up to machines. I didn’t even recognize the baby in the photo. I was informed my nephew, Jeffery, was in Golisano Children’s hospital in Rochester, NY. I was told very little because nobody in my family was being told what was going on.

baby in hospital with shaken baby syndrome with monitors attached to head
Courtesy of Amanda Hall

Jeffery had been in the hospital since the 3rd, two days prior to me finding out. As soon as I found out I dropped everything, left my job, and drove over an hour to be there with Jeffery. When I arrived, my sister met me in the parking garage. She took me up to the Ronald McDonald house suite within the hospital. On the way up she vaguely told me what had happened to Jeffery. She stated he had bleeding on the brain and they had no idea what caused it. She said on the 3rd her boyfriend had been at work with Jeffery. He had started taking Jeffery with him to the farm he worked at in Cayuta, NY because my sister was tired. Jeffery was kept in a chest carrier while my sister’s boyfriend worked — whether it be plowing hay, feeding horses, or caring for chickens.

On this particular day, my nephew had only just turned 3 months old, barely old enough to lift his head, and whilst being in a chest carrier on a tractor plowing hay, lost consciousness. He stopped breathing. My sister’s boyfriend noticed something was wrong and got off the tractor. He removed Jeffery from the carrier and ran to his boss who was able to perform CPR to get him breathing. Shortly after this the ambulance arrived and rushed him to Arnot Hospital in Elmira, NY. From there he was life-flighted to Rochester where he was put on life support. My sister and her boyfriend did not go with Jeffery. They instead decided to drive themselves and didn’t arrive to be with Jeffery for many hours. Once they arrived, they were put up in the Ronald McDonald house where they spent the night. My sister said they visited with Jeffery briefly but didn’t stay with him because he was ‘lifeless.’

baby with shaken baby syndrome in hospital with breathing tube
Courtesy of Amanda Hall

Once we got to the RMH, she showed me around like she was on vacation at a 5-star resort. Her boyfriend sluggishly came out of their room, grabbed some food, and escorted us back to the parking garage where he ‘smoked’ and she took some pills. Finally, we headed up to the NICU where Jeffery was. The second we got off the elevator my heart dropped to my feet. I wasn’t ready for what I was about to see. We walked only a few hundred feet but it seemed like miles. I still remember the smell of saline and alcohol as if I was there. The beeping and the sounds of the machines working to keep my nephew alive still haunt my dreams. Yet this was only the beginning of his story.

My sister and her boyfriend headed to the seat in the corner of the room, walking right past Jeffery as if he wasn’t even there. As I approached the bed he was lying in, my eyes welled with tears and it took every ounce of self-control to not drop to my knees sobbing. I asked the nurse if it was okay for me to hold his hand. She smiled and informed me any and all human contact was necessary for his rehabilitation. She stated my sister and her boyfriend only came down to take a few pictures here and there, then they would go off and do whatever, leaving Jeffery there with just the nurses and the machines to keep him company.

She asked me if I wanted to hold him. I said yes and she handed him to me and said to let her know if he had any odd eye movements because he was now experiencing seizures. My sister was paying attention at this point and showed a video of Jeffery’s eyes twitching side to side. She asked the nurse if this is what she was referring to. The nurse left the room in a hurry and a neurologist then came in. He told us there was a camera on the bed to capture any visual seizure activity and he was connected to the EEG to monitor the seizure activity in his brain. He also had two tubes draining two different bleeds — one of which was a few weeks old and the second one was much more recent, at most a week old. He also described how Jeffery had sustained blunt force trauma to the head, resulting in a detached muscle and hemorrhaging in Jeffery’s right eye.

infant lays in hospital with monitors after experiencing shaken baby syndrome
Courtesy of Amanda Hall

Not An Accident

There was no way the damage caused was accidental. The neurologist explained the injuries my nephew had sustained were similar to the damage a small child would receive if they went through a windshield from a high velocity car crash. He then let me know the police had interviews lined up for my sister and her boyfriend as this case was being labeled as Non-Accidental Head Trauma, aka Shaken Baby Syndrome.

I was in shock at this news. My sister had not led on, in any way, that she and her boyfriend had any knowledge of the abuse. I did find it odd neither of them was attentive or even concerned about Jeffery at this point. I didn’t understand how either one of them were being so calm and collective. I was a mess and this child wasn’t mine. I had left my job where I was taking care of an elderly man to rush to this child’s side, yet his parents weren’t showing any signs of distress while Jeffery was fighting for his life. My son was 8 years old at this point in time, and I couldn’t imagine him being in this condition, but I knew I would not be content doing anything until I was sure he was going to be okay. So how were these two ‘parents’ not a wreck? How were they able to smile and laugh while this little angel laid there in pain, scared for his life? These are the questions I will never get answered.

No one will ever know what was going through their minds besides them. But one thing for sure was Jeffery was fighting this fight alone. I knew what I needed to do. I had to be there for Jeffery. I had to do whatever it took to figure out what happened to my nephew. But how? What could I do? I was married to a man who needed me to care for him at home. I had a young child who also needed me to be there for him. Not to mention, a full-time job and a grandmother I took care of. I couldn’t possibly be in Rochester and take care of all my responsibilities back home. But I had to, so I made it happen.

baby lays with blankets while drinking a bottle
Courtesy of Amanda Hall

Taking Over Jeffery’s Care

Shortly after the neurologist left the room, I made a call to my husband to discuss what I should do. I elaborated as to how important it was that I be there for Jeffery as much as possible. He was hesitant at first but knew I wasn’t willing to leave this boy’s side. He made arrangements for my mother-in-law to help with our son, and I called off work and asked my uncle to help my grandmother if she needed help within the next few days while I figured out what my next steps were going to be. Shortly after that my sister came back to the room and asked, in the event Jeffery be taken from them, if I would be able to take him in until they could get this taken care of. I agreed, without hesitation, to be there for him. She then took one final picture of Jeffery and left again.

It was getting late at this point and the nurses informed me visiting hours were over at 8 p.m. but they wouldn’t make me leave if I was a parent or guardian. Unfortunately, I was neither. I was just an aunt, so I left for the evening. I cried the whole ride home. I got home in time to help my husband get to bed and tuck my son in. I spoke with Peter about my upending thoughts on possibly bringing Jeffery home to live with us for a while. He was all in. He was willing to share his room, his toys, and his parents. I let him know we wouldn’t have Jeffery forever, as his parents would get him back as long as everything went well. He said, ‘If we have to have him forever, I would be okay with that. I have the best mom and dad and Jeffery needs us.’

baby smiles while sitting in his car seat
Courtesy of Amanda Hall

I smiled and tucked him in for the night. I kissed his head and shut the door. How did I get so lucky? I had a beautiful healthy child, who had barely had a scratch in his entire life. How would I know what to do with a baby who needed so much care? I took care of the elderly for a living, not babies. Could I really handle a sick baby and a sick husband? I didn’t know. But I knew I had to try.

The next morning, I went right to the hospital as soon as visiting hours opened. My sister and her boyfriend were removed from the hospital grounds that day. CPS contacted me about fostering my nephew. I was approved and had to take a few classes in the near future, but it was set, I was going to be a foster mom to my nephew. I was now responsible for his care. They also wanted to inform me my sister had confessed to throwing my nephew, stating she had raised him above her head and threw him on the bed multiple times over the past few weeks. She said she was tired and he wouldn’t stop crying. She would later recant the statement, saying she was forced to confess because the investigator was too intimidating.

Jeffery’s Medical Journey

Over the next few weeks, Jeffery made some progress and was able to come home on September 24, 2019. He came home with a G-tube and the need to have his left eye patched. He had to take meds for acid reflux and his seizures. He had stitches on the top of his head and bruising from all the medical tape and iv’s. He also had a blood clot in his left leg from a picc line. He was in a lot of pain from the mickey button in his belly that held his G-tube, and appeared to have headaches. He also had a lot of fear, from nightmares to not wanting to be lifted above my head. For example, when being taken out of a chest carrier he would scream.

stitches on the top of an infants head
Courtesy of Amanda Hall

We had a long road ahead of us. I decided to quit my job, opened a business, and focused on Jeffery’s health and development. Jeffery had to go to the doctors in Rochester multiple times a week from the hematologist, gastroenterologist, and ophthalmologist, to the neurologist and neurosurgeon. He also had a primary doctor in Corning, NY he was seeing once a month. The brain bleeds had severely delayed his development. We got PT and OT on board immediately. Progress was slow but he worked hard every day to gain on his development. Two months went by and we were making small strides at improvements.

Then one day while out to dinner, Jeffery started to have these strange movements. It appeared as if he was being frightened/startled in his sleep, but he was awake! He would scream and cry as soon as he stopped making the movements. I wasn’t able to console him to calm his crying. I was terrified. What was going on? The only thing that made sense was he must be having seizures, but these were different.

I rushed him to the emergency room in Corning, NY. They did everything they could to try and figure out what was causing these ‘episodes’ and it was determined he was experiencing ‘infantile spasm seizures.’ They rushed us to the Golisano Children’s Hospital in Rochester for further treatment. I rode right next to him in the ambulance the whole 1.5-hour ride. He would doze off for a few minutes, and I would fear he wouldn’t wake up. I was so scared. I couldn’t stand seeing him in so much pain and discomfort. I felt helpless.

When we arrived at the ER of GCH, they hooked him up to an EEG machine and monitored his seizures in the ER until a room opened upstairs. It was just us against the world at this point. I was all he had. CPS was informed of his condition and they informed my sister and her boyfriend. I was beside myself with fear of them coming to the hospital. He was terrified of them; he was afraid of anyone who resembled my sister and would become very upset at the sight of them. I couldn’t bear to see him in more distress than he already was. I refused to allow these people to come to the hospital and CPS agreed it was in Jeffery’s best interest to keep them away for the time being. They barely showed up to their visits anyhow, and if they did, they spent the whole time on their phones, not with him.

aunt takes selfie with her nephew who she later adopts
Courtesy of Amanda Hall

Days went by with the two of us alone at this hospital in Rochester. I never left his side. He was no longer being fed through his G-tube at this time, despite the doctors saying he would never eat on his own. Would this setback make it so he wasn’t able to eat on his own? I noticed he would lose some development every day as the seizures got worse. He once again wasn’t able to hold his head up, and he lost use of his left leg and his right arm. All the strides we had made in the past two months were gone. He couldn’t stand to be set down for even a second, so I had to constantly hold him to keep track of his seizures. He was having over 100 seizures a day. He’d been started on a medication called ACTH, which was an injection of a steroid into his thigh. Jeffery handled the shots well and I was trained to give him the injections, and after a week we were sent home.

Jeffery was lucky to be able to make it home for Thanksgiving and was able to enjoy some soft foods by mouth for the first time. He continued to have infantile spasm seizures until December 18, 2019. This just so happened to be the day my husband was able to finalize the adoption of our son, Peter.

older brother holds his younger brother in his lap
Courtesy of Amanda Hall

Life During Covid

Now it was also being brought to our attention the case against my sister and her boyfriend was growing and we would be going to trial to hopefully get Jeffery the justice he deserved. Court dates were set and visits were now to be held by Pathways where they could be supervised in a public setting, due to them making threats toward my family. My sister and her boyfriend would show up occasionally to the visits, but whenever they did, they would be late and leave early because Jeffery would cry most of, if not the entire visit. Jeffery wasn’t comfortable being away from me and would have nightmares on the nights he had his visits. Oftentimes, I would have my grandmother with me when I dropped Jeffery off for visits. The visits were supposed to be an hour long but I wouldn’t even have enough time to go a few miles away to grab lunch for my grandmother while he was at his visits because they would want to leave after 15-20 minutes each time. CPS informed me we had to continue offering the visits until their rights were terminated.

Then came March of 2020, and Covid happened. Everything shut down, visits stopped. Jeffery made great strides during this time in his therapy. We were now seeing progress and Jeffery was almost a year old. He was doing better than anyone expected. He has been seizure free for four months now and is getting stronger every day. Due to the ACTH shots being a steroid injection, he had gained a lot of weight. He was 32 pounds and only 9 months old. His weight was a challenge that made progress more difficult, but it didn’t hold him back for long. He was able to roll over for the first time on April 13, 2020! There’s no stopping him now!

In the beginning of May 2020, my husband’s health took a turn for the worse. My husband, Brandon, had Cystic Fibrosis and had to have a double lung transplant in July 2012. The transplant itself went well and he was able to live a fulfilling life until he was diagnosed with kidney failure in December of 2018. Due to the rejection medications he was on for his lungs, his kidneys had begun to fail. He had since been on dialysis. First, he was doing Hemodialysis three times a week at the hospital, then he was put on Peritoneal dialysis seven days a week at home. He did well on dialysis but was in need of a new kidney. Due to the strict diet and Brandon’s struggles with eating, he lost a lot of weight. He was unable to maintain his weight and keep his fluid down which caused him to get overloaded with fluid and he ended up in New York Presbyterian Hospital for six weeks. He had to have a procedure to drain the fluid from his lungs and a lot of IV antibiotics.

dad holds onto his son while they are laying on couch
Courtesy of Amanda Hall

While Brandon was in the hospital, it was just me and both boys alone every day during quarantine. I spoke with Brandon via texts and calls; Jeffery and Peter would video chat with Brandon before bed each night. Pathways and CPS set up video chats for my sister and her boyfriend to have visits. They were offered two, 1-hour long, virtual visits each week. They showed up to the first virtual visit May 19, 2020 and were only present for four minutes before they ended the visit. Jeffery didn’t pay attention to them so they gave up. After this visit they did not show up for any other virtual visits.

July 29th, CPS and Pathways set up an in-person visit. They did attend the entire visit but they brought a 4-week-old puppy with them, so they were paying attention to the puppy, not Jeffery, which was deemed unacceptable behavior by Pathways and was reported to CPS. They were instructed not to bring the puppy to the next visit. Yet they brought the puppy the next visit anyway. After this visit, CPS informed them they were to show up without the puppy or forfeit the visit. They decided to forfeit the next visit and most of the visits in the future.”

Amanda and Jeffery’s story continues. Read the rest here.

This story was submitted to Love What Matters by Amanda Hall of Bath, NY. You can follow her journey on Facebook and support her business on Facebook and ShopifyDo 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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