‘You’re lucky he didn’t die in his sleep. He is 1 in 6 billion and will be bedridden for life.’ I clenched my husband’s hand in disbelief, tears welling in my eyes.’: Mom praises medically complex son, ‘He is our little heart warrior’

More Stories like:

“I remember the day my life changed. I was halfway through my fourth pregnancy, as my husband and I repatriated back to the U.S. with our three daughters. I thought I was having a healthy pregnancy with my first son, Beau. Until all of a sudden, I wasn’t.

Heart defects, open heart surgery, poor outcome, chromosome disorder — those were just a few of the terrifying words thrown at us during the second half of my pregnancy. I became a Google medical doctor overnight from constant researching online. The clock was ticking to save our son’s life.

Courtesy of Amanda Liter

We decided to transfer care from Norton’s hospital in Louisville, Kentucky to Cincinnati Children’s Hospital, because they were #2 hospital in the nation at that time. The journey with our son’s birth and fight for life took us to places we never could have dreamed of. Eight days after our son’s birth, he went into the operating room to have open heart surgery to correct his multiple complex and severe defects. Five long agonizing hours, he was back there while doctors tried to save his life.

The aftermath recovery period after the surgery was the worst. To see him so lifeless and pale hooked to multiple machines with wires everywhere, all in an attempt for him to heal and come home to us… it was overwhelming. We were completely out of control. All we could do was pray and hold his little hand because holding him was not allowed for over one week post-op.

Courtesy of Amanda Liter

Every day, Beau got stronger and eventually moved to a step-down unit. Additional testing was done to see if he had a chromosome disorder. We were in our son’s room watching him sleep when three genetic doctors in white coats walked into the room. They had clipboards and looked serious as they introduced themselves to us and extended firm hands. They asked if we could go to another private room to discuss the results of Beau’s testing. I remember walking down the hallway in a fog.

What was next? Our son had had open-heart surgery, actually survived, and his doctor had told us he did not think Beau would need any additional surgeries in the future. It was a miracle. We were going home. Nothing else bad could happen, right? We had survived the worst, or so we thought. Little did we know, that was just the beginning.

Courtesy of Amanda Liter

As we sat down in a small white room with chairs in a circle, we looked at the older genetic doctor as he began to speak to us. He told us what they found with our son was so rare, there was no one to compare him to. They said he was one in six billion. They told us children similar to ours were on both ends of the spectrum. They said our son was special needs. He would never live independently on his own. I remember being stuck on that sentence.

‘He will never live a normal life?’ I asked. They said, ‘Unfortunately, no, we are afraid not.’ I remember asking them how they could be so sure since our son was so rare. They told us for the first time the phrase that would become our son’s mantra and would hurt us to the core every time we would hear it: ‘Only time will tell.’

They told us they suspected our son would be mild to moderately delayed. They said they believed he might walk and talk but in his own time frame. At that point, their expressions had gone from serious to sad. It was news they did not like to tell. Again, I asked the tough questions. ‘So, he will never get married or have kids of his own?’ ‘No, he will not.’

The tears welled up in my eyes as I clenched my husband’s hand in disbelief. The doctors excused themselves and let us have some time alone. We sat together, cried, and looked through the thick print out of 2q duplication of the photos of children with similar disabilities as our son. We were scared of what the future held. We kept asking ourselves, ‘Why?’

Courtesy of Amanda Liter

A few days later, we were discharged home for the first time. Our son was a month old, and this was a day we had dreamed about. It was a couple of days before Thanksgiving, but it didn’t look like it was supposed to. Now we were going home with a special needs heart warrior. We didn’t know what that meant or what was in store. We weren’t home long. It was only two days before we were forced to go back.

On Thanksgiving, our family stood by, concerned, as we watched our son have seizure after seizure, and as we wheeled his oxygen tank around the house and fed him through his G-tube. They knew life would never be normal for us again. They didn’t have to say it. We could see it in their eyes.

Since our son had started to have back to back scary seizures, with each one lasting longer each time, we were quickly admitted to the Neurology unit of Cincinnati Children’s Hospital. After further testing, it was determined our son might have had a stroke during his heart surgery, which was causing the seizures. He was diagnosed with epilepsy, and after a few weeks of regulating his medication, we were discharged home right before Christmas. Still a newborn, and with undergoing so much already, we decided to stay indoors with our son until his sleep study appointment in early February.

Courtesy of Amanda Liter

From Christmas to February, we survived on autopilot. We had oxygen tanks, machines, and cords to help us get throughout the house. We fed our son with a special formula we had to prepare and gave to him through his G-tube slowly. He vomited numerous times per day. His pulse of machine alarmed too many times to count throughout the day and night as his oxygen levels would dip and go back up as quickly as they would go down.

He didn’t sleep. We didn’t sleep. He cried nonstop for hours throughout the day. Somehow we made it to the sleep study day. It was supposed to be a test overnight and we would go back home the next day.

Nothing could have prepared us for our next hospital stay journey ahead. The doctor came in the next morning to let us know our son stopped breathing too many times throughout the night, and taking him home was not a safe option until they could figure out what to do to keep him safe. They told us we were lucky he did not die in his sleep while we had him home. He was diagnosed with severe obstructive sleep apnea. That was when we learned of his multiple airway defects.

He was diagnosed with laryngomalacia (a floppy airway, low muscle tone throughout his airway) and Pierre Robin sequence (a condition where his jaw retracts back forcing his tongue to hang over his airway and cover his airway, which was critically narrow). We asked what was next.

They told us the worst-case scenario would involve placing a tracheotomy in our son’s airway to help him breathe better. They told us they wanted to consult with plastics first to see if surgery could correct some of the defects. The plastic surgeon said he could not perform the surgery.

Next up was a consult with Pulmonary, due to his vomiting and stomach issues, along with his lungs. He was diagnosed with aspiration pneumonia and they started antibiotics once he became sick from vomiting so much. ENT became part of our son’s team and wanted to take a look at his airway in the operating room.

Courtesy of Amanda Liter

It was his second anesthesia operating room trip. We were terrified. We had been told any additional time our son would need to go under anesthesia in the future, he would be at risk due to his rare disorder. Our son required more oxygen support and we knew he needed the ENT doctors to check out his airway more extensively. We waited for an hour on the third-floor surgery area while our son went back.

All the memories of the last time we were there were flooding back. We felt like every time we took a step forward, we had to take several steps back. It was an emotional roller coaster ride, with no end or happy ending in sight. We prayed and cried. We leaned on the support of our friends, family, and our son’s prayer warriors to get us through.

They pulled us into a holding room while we waited for the ENT and pulmonary doctor to come in with results. We were hoping for good news, but we knew in our hearts, it wasn’t going to be good. The doctors came in and told us our son’s airway was worse than they had suspected. They told us if he was going to stand a chance, he needed a trach placed in his airway.

We were shocked. This was the worst-case scenario. It was really happening. How would we take care of a baby with a trach? We weren’t even in the medical field and stuff like that terrified me. They told us to take some time to think about it and research it.

Once our son was well enough for the surgery, in March of 2018, he had his three-hour surgery to place his tracheotomy tube. We spent another three months in the hospital battling setback and after setback while we learned how to care for our son’s trach. We went through extensive education to learn all the ins and outs of life with a trach baby.

Courtesy of Amanda Liter

It was a scary time.

Once our son recovered from the surgery, the hardest part was not being able to hear his voice. He cried, but we couldn’t hear the sound. It was awful. I cried every day over his voice. It seems silly now, to think that was the thing I was hung up on, considering everything else going on. But I felt we had been robbed, and life would never be normal again.

We finally made it to discharge day, June 2018. We were happy we had made it through the winter months and our son had survived so much. We went home with multiple medications and supplies to keep our son alive. We had connected with a nursing company and had interviewed nurses to come into our home and help us a few hours a day with our son.

From June to August, our son had nine readmissions to Cincinnati Children’s Hospital, due to sickness related to aspiration. August 2018, he went back in and never returned home to us.

Courtesy of Amanda Liter

He went through several more surgeries. A Nissan wrap for his stomach, G/J tube placement, and was placed on a ventilator with his trach. He was touch and go for a while with sickness. December 2018, Beau’s teams of doctors, along with genetics, called us in for a conference. We sat at the end of a long table surrounded by concerned doctors who had cried with us and held our hands through the hard parts of our journey.

They told us that our son had not met a milestone since he was 3 to 6 months old. He was 14 months old at that time. Genetics told us they were wrong when they told us our son would be mild to moderately delayed. He was was severely delayed. Then they said they were also wrong when they told us our son would walk and talk eventually.

They said, ‘We do not think your son will ever walk or talk and will be bedridden for life.’

We sat there surrounded by sadness. Every single bit of it out of our control. I wanted to run, scream, tell them they were wrong. I wanted to tell them it was all a dream and they had the wrong family sitting there. What a cruel joke they were playing on us. How could they? But as it started to sink in and we began to process what they were saying, tears welled up in our eyes.

We were told we had a few options. We were introduced to the Palliative care team with an end of life plan as an option. They told us our son was suitable medically for an end of life plan. I remember asking them to repeat this several times. At one point I said, ‘You mean my son’s life is considered not worth living in the condition he is in?’ Based on his disabilities, an end of life plan was appropriate for him.

Who were we to play God? Did we come this far, for this?

Our next option was taking him home but we would have limited help and resources, due to the area we lived in. We were told another option was long term care facilities. We had a lot to think about and consider. They gave us time to explore all of our options.

Courtesy of Amanda Liter

It was a really dark time. I remember when we were exploring the end of life plan as we met with pastors and other families who had made that choice to end the suffering. I had never been so low. I had never felt so out of control over my life.

I was on my way home one evening during this particularly dark time, and my phone kept pinging with text messages. I pulled over and several friends had messaged me and asked if I had seen the marquee at the downtown movie theatre yet that day. I replied, No,’ and with tears still flowing down my face, I made my way home. I had to pass the marquee to get home, and as I looked up and read the words, I was overwhelmed with emotion. I had to pull over to pull myself together. Written on the marquee was our son’s name. It said, ‘Beau Liter is awesome.’

Courtesy of Amanda Liter

Our son’s journey was known in our little small town and our community had voted our son as the person to put who was awesome on the marquee. Our community didn’t know what we were facing during that time, but God knew. At that moment, I knew. Our son’s life mattered. He had a purpose. After seeing that, we shut the door on the end of life option and began to pray harder for healing and stability for our son.

Courtesy of Amanda Liter

God answered our prayers.

We knew what bringing our son home with limited resources, his complex medical needs, and having three other children in our home looked like. We knew we physically couldn’t do that again. We tried so hard to get more nursing support from other companies, but nothing came through.

Lastly, we faced our third and final option. We reluctantly toured facilities. After multiple complex surgeries and interventions, numerous hospital stays, unstable health challenges, a devastating diagnosis, and an unimaginable hard decision — we somehow survived. It made us all stronger. We became fighters. Warrior Advocates. Our faith was strengthened.

Courtesy of Amanda Liter

Another year passed, and the day we had been waiting for finally arrived. It wasn’t how it was supposed to be, but we knew it was what was best for our son. Our hearts were broken but also filled with so much love and joy for our child’s next journey.

Courtesy of Amanda Liter

As my husband and the nurse were getting Beau into the van in his wheelchair, I looked up and that’s when I saw her. A mother was walking out of the hospital holding onto her son’s little hand. Her gaze landed on our son. I remember how cold and windy it was that day, as I pulled a strand of my hair away from my eyes and fought back tears. She didn’t see me at first, but I saw her long enough to catch her initial reaction to my son.

She didn’t smile. She looked sad. It was obvious she felt sorry for him as she looked with sad eyes at all of us. Then as her eyes met mine, she quickly turned away sad and embarrassed when she realized I had seen her.

Honestly, what she’ll never realize is I actually felt sorry for her. She’ll never know the love and bond of having a warrior special needs child. Warrior moms know something ‘normal’ moms don’t. I can say that because I once was a mom to just ‘normal’ kids. Warrior moms know how precious every milestone and every breath is. Warrior moms wish they had held that ‘normal’ baby just a little while longer when they were little because now she knows what it’s like to not be able to hold her sick child — or to have to maneuver around wires and tubes to hold her precious warrior.

Warrior moms wish they had never taken all the normal things for granted with their warrior’s siblings: the walking, learning to talk, and eating food by mouth. A warrior mother knows she’ll never do that again. She’ll never look at life the same. Because of her warrior, life will become more precious, more ‘live in the moment,’ and more appreciative of the little (but actually big) things.

Courtesy of Amanda Liter

The next time you look at a disabled child in a wheelchair with sadness, know that child has a story, just like our sweet Beau. Know that child is a fighter, a warrior, and that warrior mother is happy and proud beyond words of her not so ‘normal’ child. Unlike that normal child, that warrior in a wheelchair has fought to live and taught those who know them more than anyone else ever could.

I wish I had told that mother that.

Courtesy of Amanda Liter

Life for Beau now has become more stabilized. Even though he is bedridden, he is happy, smiles constantly, and is hardly found in his bed throughout the day. He loves watching TV and listening to music. He receives PT, OT, speech, music, and swim therapy. Once he turns three, he will attend preschool.

He is going through the motions of a normal life. He gets to go on outings and participate in parties at his group home, which we get to attend as well. All the while, his little life, fight, and smile capture all of our hearts. Because of Beau, life has become more precious, beautiful, and we couldn’t imagine our lives without him, just the way he is.”

Courtesy of Amanda Liter
Courtesy of Amanda Liter

This story was submitted to Love What Matters by Amanda Liter of Madison, Indiana. Follow Beau’s journey on Facebook. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos. 

Read more touching stories like this: 

‘It’s time to let go.’ They wrapped him in his Superman blanket. Daddy held his little boy, for the last time.’: Couple lose first child to extremely rare YARS2 disorder, ‘Every single day we miss his smell, his little personality’

‘I’m having a hard time finding the baby’s head,’ the doctor said. ‘Were you bit by a mosquito during pregnancy?’: Mom births miracle baby with microcephaly, ‘He brings us endless joy!’

Do you know someone who could benefit from reading this? SHARE this story on Facebook with family and friends.

 Share  Tweet