Amelio’s Angel Journey
Australia
By Vanessa Sobbi
06.05.25 – 15.05.25
At 32 weeks into my pregnancy, we learned that I had developed polyhydramnios, an excessive build-up of amniotic fluid. It was the beginning of a journey that none of us could have ever prepared for.
By 33 weeks, doctors suspected that our baby, Amelio, had either oesophageal atresia (OA) or a tracheoesophageal fistula (TOF) – conditions where the esophagus might not be connected properly to the stomach. Surgery would likely be needed after birth, and we were referred to Dr. Gordon Thomas.
At 34 weeks, I was in and out of the hospital because of the fluid build-up. They were concerned about the risk of my uterus rupturing or the placenta detaching, so I was placed on rest.
When we met with Dr. Gordon Thomas at 35 weeks, he explained the surgical plan, and before we left, I asked him, “What are the chances this isn’t the case?”
He replied, “Less than 1%.”
Oh boy was he right about that.
At 36 and 37 weeks, the fluid made it almost unbearable for I couldn’t walk, eat, or sleep. I could barely feel Amelio moving. After more hospital visits, the plan was made to induce me at exactly 38 weeks. I held out to exactly 38 weeks. I didn't sleep at all that night.
The Day He Arrived – 06.05.25
We arrived at the hospital early that morning.
At 9am, they attempted the epidural, which had to be done three times as I couldn’t bend far enough for them, due to the fluids. Eventually, it went in and we thought it was a success only to find out later on I was only numb from my legs.
We struggled to find his heart rate all morning, due to all the fluid, so they decided they’d attach a monitor to his head once they broke my waters.
At 11:30am, they did. Fluids gushed out, I flooded the floors and we had to have towels covering the floor. My contractions weren’t consistent at first, and then Amelio’s heart rate dropped for 5 long minutes. We were moments away from an emergency C-section. It was the scariest 5 minutes, over 10 nurses and doctors rushed in, all I could do was burst into tears, but thankfully, he stabilised.
Because of inconsistent contractions, I was given pitocin to induce stronger, more consistent contractions, and the pain was unbearable.
I felt I was about to break in half so I started pushing. Three pushes later, with everything I had, Amelio entered the world headfirst. I was told with the next contraction to give a big push and he would be out. One massive push and he was born, my beautiful boy.
He was placed on my chest for a minute…quiet, just blinking. I was numb, overwhelmed and so full of love. He was here, he was safe and now his journey to fix his OA begins, or so I thought. They quickly took him to the waiting doctors, hoping to hear a cry. When he finally let out his first little sound, they transferred him to the NICU at Westmead.
Initial tests showed the tube went further than they expected. Seventeen centimetres, which confused them.
Doctors thought maybe it wasn’t OA or TOF after all. For a moment, hope filled us. Maybe we’d have our baby with us sooner than we thought. He was then transferred to Westmead Children’s Hospital. They started more tests: x-rays, IVs, oxygen, and a suction tube to help with secretions. They kept mentioning to my husband that he had so much. An x-ray showed one lung looked blurred, possibly pneumonia, but they hoped it would clear up.
That night, at 9:30pm, I finally saw him again. I waited as they tried to place another needle in his tiny foot. He cried, his sweet, soft, dinosaur-like cry. I wished so hard I could take all his pain away, I was mad that they were putting him through this pain at only hours old. At 10:30pm, they laid him on my chest for the first time since he was born. In that moment, I felt real peace. I stayed 20 minutes with him on my chest before exhaustion took over. I put him down as he slept, and had to go back to a different hospital to recover.
07.05.25 – Day Two
The second day felt like a blur, time moved strangely, and nothing definitive happened. Amelio had more x-rays and tests, and the team continued trying to figure out what was going on. Dr. Thomas visited us and shared something that confused him: the tube they were using to check for OA or TOF was going down further than expected, further than it should have if those diagnoses were correct.
It didn’t make sense, and Amelio wasn’t fitting the usual patterns. They decided more tests were needed before they could understand what was truly happening.
08.05.25 – The Day Everything Changed
The next morning, I was by his side. Around lunchtime, the doctors said they’d be doing a dye study and CT scan to better understand what was happening. I signed the papers, and they gently asked me to leave the room, intubation would be distressing to watch. They said they’d call when it was over, likely around 5pm.
I discharged myself from my hospital and went home. We picked up all of Amelio’s baby items that afternoon and went home and started setting up his things.
At 5pm, I called his nurse. “Sorry, Vanessa. He just went in. We’ll call once he’s out.”
At 7:30pm, the phone rang: “Hi Vanessa, the doctors have just finished, and want to update you on their results.”
By 8:30pm, I was by his side. Amelio looked different. More wires, more tubes. His chest was heaving. I looked at my husband, Anwar, and said, “Something’s not right.”
He replied, “ What do you mean?”
I pointed to his chest and said, “Look at how he’s breathing, he wasn’t like this this morning”
He replied, “You're over thinking, let's go see what they have to say.”
At 9pm, they asked us to come into a room for a family meeting. Even before I entered, I started crying. I already knew in my heart that something wasn't right.
The doctor spoke very straight with me. “What we originally suspected wasn’t the case. Amelio has taken us by surprise. We haven’t seen a case like his in 17 years.”
He was diagnosed with laryngeal cleft type 4, an extremely rare condition where there is an abnormal opening between the larynx and the esophagus. In type 4, the cleft extends all the way down, even past the voice box, and into the windpipe making it almost impossible to breathe, swallow, or protect the lungs from fluid and food going down the wrong way. Most doctors will never encounter this condition in their careers.
I asked, “Okay… so what can we do?”
The doctor took a breath. “If we attempt surgery, he may not survive. And if he does, he will need a tracheostomy to breathe and a feeding tube directly to the stomach and even then, he may never be able to leave the hospital.”
I asked through tears, “What’s the survival rate?”
He said, “Less than 1%.”
The room felt like it was spinning. I couldn’t breathe. My heart broke into pieces.
I asked again, “And if we still try surgery?”
He said, “We don’t recommend it. The severity of Amelio’s case means even with intervention, his life would be full of suffering and even then, he would likely pass away.”
In that moment, everything collapsed. The hopes, the plans, the nursery at home, it all shattered. My beautiful baby, so brave and peaceful, was facing something none of us could fix.
After the diagnosis of laryngeal cleft type 4, there was a long silence. Five minutes passed before the doctor quietly added that during Amelio’s dye test, one of his lungs had collapsed. They had inserted a chest tube into his left lung to try and help him struggle less.
They told us honestly they didn’t know if Amelio would survive the night.
Everything after that was a blur. I remember the doctor mentioning he would speak to specialists overseas. As he was leaving, he paused and said, “Don’t think we’re giving up.”
But my mama heart knew. He had already seen inside my baby. He knew how severe it was. He knew Amelio would die, no matter what we chose to do.
The nurses held me as I broke down. They gently offered us the use of the NICU’s parent room so we could stay nearby for as long as we needed.
That night, we sat beside our son, whispering into his ears. Eventually, I needed to step away. I felt like I was suffocating. We went home, and my family came over. We all sat, cried, and searched for answers deep into the night. But I couldn’t stay away for long. I went back and sat with my boy until 1am, then finally laid down in the parent room, unable to sleep.
09.05.25 – He Survived the Night
I didn’t sleep. I spent the night researching, crying, praying for a miracle.
Hoping it was some sort of mistake.
My baby boy made it through the night.
When I got up, my eyes were so swollen I could barely see. I had to go down to the pharmacy to get eye drops. Once my eyes settled, I sat with Amelio all morning.
No updates came. No one spoke to us for hours. Eventually, the head of NICU said the ENT team would consult with doctors at Cincinnati Children’s Hospital in the U.S. That was it. That was all we were told.
Later that day, we asked my parents, my brother and his wife to bring the kids in to meet their baby brother. We thought it might be their only chance.
Angelo sobbed and said, “Mama, why my brother? Why my only brother? I would’ve been the best big brother.”
Alina seemed to understand but was still too little. The younger kids didn’t fully grasp what was happening. Everyone cried. Everyone held his tiny hand.
He looked so perfect on the outside. Inside was a different story.
That night, we stayed with him. I couldn’t hold him, but I hope he knew I was there. We stayed with him until 1am and then went back to the parents room.
10.05.25 – Emergency Call
At 6am, the phone rang. “You need to come now,” they said. “Amelio isn’t doing well.”
I jumped out of bed, woke Anwar, and ran. When we got there, machines were beeping, doctors surrounded him, and a standby ENT doctor stood nearby.
The tube in his lung had moved, and they needed to remove it to see if he could breathe without it.
We had another meeting and everything was foggy again. The doctor said that since Amelio had managed to breathe on his own before, he might be okay without the tube. I agreed at first, then panicked, thinking I was sending him off to die.
I begged the nurse: “If anything happens, please hold him. Don’t let him die alone. Tell him we love him.” She promised.
We walked him down to the theatre. It was the longest walk of my life.
We sat outside for an hour, hearts pounding. When the ENT doctor finally came toward us, he said, “Everything went well. He’s stable and back in the ward.”
Then he said, “Amelio’s case is the rarest in the world. There aren’t many like him. We’re sorry.” He also mentioned it was a type 4B. And that was the last time I ever saw that doctor.
It made me angry. Why wasn’t anyone asking more questions? Why wasn’t anyone asking, studying him? Why weren’t they doing more to save him?
He was so rare and special, no case like his in almost 20 years (in Australia).
That afternoon, I was finally able to hold Amelio again. He was on CPAP, a soft mask that gently pushes air into his lungs to help him breathe without a breathing tube.
After a few hours, I needed to breathe too. I went home, showered, and hugged my other babies. They wanted to see him again and they did. We took photos and they spent time with him.
11.05.25 – Our First and Only Mother’s Day
Mother’s Day. I had barely slept, but I rushed straight to Amelio’s side.
They had made a little card with his tiny footprints and a sweet message from him. I held him all day. I was even able to change his nappy. I cried as I did it.
“I don’t know why I’m crying,” I laughed through tears.
The nurse looked at me with soft eyes and said, “Because it feels natural. It’s what a mother does.”
Later I went to the parent room and cried more. I pumped milk he’d never drink, though they told me he could have a few drops for comfort. My older kids called and asked if I could come home. They had Mother’s Day presents waiting. I felt torn in two, trying to be there for all my children. I went for a short while, then came back.
That evening, the hospital staff said they would move us to a more private room and wanted to have another family meeting. They told us we had to make a decision:
• Heroic surgery — a last-resort, extremely high-risk surgery that would try to fix his airway.
• Or comfort care — to stop treatments and let Amelio pass peacefully, surrounded by love.
They promised to help us make memories- hand and feet castings, heartbeat recordings, and photos.
We made the hardest decision a parent could ever make!!
We decided to choose comfort.
Not because we gave up.
Because we loved him enough not to let him suffer.
The doctors had never done this kind of surgery. They didn’t sound confident. And I couldn’t bear the thought of him dying on a cold table, surrounded by strangers.
That night, we moved into the private room. The kids visited again. We took more photos. I held him all night. Our whole family was together for the first and last Mother’s Day.
12.05.25 – A Day of Photos, Peace, and the Little Things
Another sleepless night. I got up and went straight to Amelio, just like every day. I held him all morning, close to my heart, until the kids and the photographer arrived.
We took so many family photos that day. For a brief moment, it felt almost… normal. I even felt happy, a real kind of happy. But that joy was quickly swallowed by the pain. I knew my family would never be whole again. I smiled in the photos, but inside, I was crumbling.
After the photoshoot, the kids asked me to come home with them for a little while. The nurse gently encouraged me to go, Amelio was sleeping peacefully, and she promised she’d call me immediately if anything changed. I went home, showered, and sat with my children.
The priest called later that day and said we should do a special prayer, one that would help guide Amelio’s soul when it was time. My dad learned it so he could recite it for his grandson.
When we returned to the hospital, I asked if I could bathe and dress my baby. The nurse said of course.
It was his first proper bath in six days. As we gently placed him in the warm water, something shifted. He relaxed completely, even fell asleep in the bath. I washed him gently, dressed him, and wrapped him up.
That night, he was so peaceful. The nurse said he didn’t need any medication, he was simply content.
13.05.25 – Sweet Moments with Angelina
I didn’t sleep again that night. I started the morning as I always did by holding Amelio close.
Around 2pm, I went home to shower and spend time with the kids. When we were about to return, Angelina begged to come with us. I said yes. She was so happy to spend time with her baby brother. She kissed him, spoke to him, and sat beside me while I held him.
A few hours later, she said she wanted to eat and go home. I let the nurse know I’d like to bathe him again when we came back.
When we returned, something felt off. Amelio was waking from a deep sleep, and a new nurse had taken over. She admitted that she tried to settle him and read to him, but couldn’t. She gave him morphine to settle him, he hadn't needed it until then, and she was planning another dose when we walked in.
I told her to try and give him a bath instead. If he still needed it, she could give it to him.
She prepped everything. The moment we put Amelio into the warm water, he melted with relief, so calm, so peaceful. We dressed him, wrapped him, and I held him. He fell asleep instantly.
The nurse smiled softly and said, “A mama knows best.”
At 1:30am, I placed him in his cot. Another sleepless night began.
14.05.25 – Preparing to Say Goodbye
We started our usual morning cuddles, kisses, and time together. Then it was time for hand and foot casting. It didn’t go smoothly at first. The material stuck to his IV tape and ruined the mould.
By pure luck, the head of NICU walked in during rounds. She said we’d have another family meeting later and I asked if we could remove the IV for the cast. She said yes. She told us it would be replaced with something in his leg so he could still get morphine if needed. I was grateful.
After an hour, we got the moulds done properly.
Later, during the family meeting, they gently told us, “Anything plastic inside him is uncomfortable. We want to start removing the tubes so he can be fully at peace. We need to know when you’re ready.”
I broke down. “I can’t choose when my baby dies.”
They said they would begin that day and would stop all nutrition.
I held Amelio again. We both fell asleep together. My mum and dad visited.
They made ink prints of his feet and hands, with their own.
By 4pm, we were still waiting. I asked the nurse, “When are they taking out his tubes?”
She said, “We’re waiting for you to say you’re ready.”
I didn’t want to be the one to say that. But I told her, “Can we just go home for a little while to see the kids, in case something happens and we don’t see them for a while?”
She agreed.
We returned around 6pm. I showered, got dressed, and braced myself.
Before they removed the tubes, I kissed my baby so many times. I told him how much I loved him. I couldn’t watch, so I left the room. Anwar stayed.
When it was done, I rushed back in.
He looked… free. For the first time in his life, no tubes, no wires. He was beautiful.
We took more photos. I held him, just my baby in my arms, nothing else.
We gave him a bath (a little too cold — he wasn’t happy!). We dressed him, and I held him for the rest of the night.
Around midnight, the nurse brought in a real bed so I could lay with him properly. I hadn’t slept in days.
I laid him down. Amelio stretched out onto the bed. He looked so peaceful. We took dozens of photos. Anwar went to the other room. Amelio slept on my chest the rest of the night.
Around 2am, his breathing changed. The nurse explained that this was part of the dying process, the body slowly starts to shut down. The breathing becomes more spaced out, less regular. Eventually, it just stops.
15.05.25 – His Last Day, His Last Breath
That morning, Amelio stayed on my chest. His breathing would pause sometimes for a whole minute then come back. It scared me every time. But my boy was still holding on.
My mum called and said Alina wasn’t feeling well. She was keeping her home and would bring her to say goodbye. I asked her to pick up Angelo too.
A nurse had taken a heartbeat recording a day earlier, but it didn’t come out clearly. So they came back and did another one.
Around 11:30am, the kids arrived. They spent time cuddling, kissing, and loving their baby brother. I could imagine the bond they would’ve had if life had been kinder.
I wanted to give Amelio one last bath, and the kids helped. That became their final goodbye. I’m so glad they were part of it.
After they left, his skin began to change to more pale, more tired.
My aunty, brother, and sister-in-law visited too. They could see he was fading.
By 8:30pm, it was just me, Anwar, and Amelio. The nurse looked at me and said gently, “It’s close now.”
I nodded. I knew. But I tried to stay calm for him. I held him. Kissed him. Whispered how loved he was.
Around 10pm, he began to struggle again. We gave more morphine. Anwar was falling apart. It was hard to manage both grief and the weight of holding us together. I asked the nurse for help repositioning him. When we did, he flopped in my arms, pale. I thought he was gone.
But then… a miracle.
His colour returned. His fingers and cheeks pinked up. His breathing smoothed out.
The nurse stared in shock. “I’ve never seen this before,” she whispered.
She called it a moment of clarity, a strange, beautiful calm before passing.
He opened his eyes. I placed him in his daddy’s arms.
He looked at Anwar, moved gently, stared into his eyes. It was like he was saying “I know you love me. I see you.”
The nurse was stunned. “His morphine dose is so high, he shouldn’t even be this alert.”
I told Anwar, “Talk to him while I go to the bathroom quickly.”
For 30 minutes, Amelio lay in his daddy’s arms. I took one final photo of him.
I took him back and placed him on my chest.
Anwar went to eat, and the nurse took her break.
Around 11:20pm, the nurse returned from her break. We sat in silence.
At 11:40pm, Amelio took one last breath… then nothing.
We waited.
I whispered, “It’s been too long.”
The nurse said, “Just wait a little more.”
But I knew. My heart knew.
I said again, “It’s been too long.”
She checked. No heartbeat. She quietly said, “I need to call the doctor.”
The doctor came. She checked, then looked at me and said,“I'm so sorry, take all the time you need”.
My baby was gone.
I felt a pain, as if my heart was ripped out from inside of me, and I was never going to get it back.
We cried silently with our baby in our arms.
They left us in the room. As the door closed, the light above us flickered, over and over.
It was Amelio.
Telling us, “I’m still here.”
The nurse walked back in, tears in her eyes. “I’ve never met such a spiritual baby in my whole career.”
She changed and wrapped him so sweetly, then told us we could take as long as we wanted.
I knew I would never truly be ready to let him go. I held him for over an hour, memorising every detail, before the moment came to walk down the long hallway to the morgue. The nurse carried Amelio gently in her arms, holding him as if he were her own.
We gave our baby boy one last kiss, one last hug, and watched as she walked away with him, until he was no longer in sight.
Leaving the hospital that day, we knew we would never return to see him again. We stepped outside into a new reality, a lifetime without our beautiful Amelio.
Two days later was his burial. My dad had arranged a custom white casket, so small it shattered our hearts the moment we saw it. Amelio came home for the first time in that casket, the first and only time he entered the home he should have grown up in.
We cried until no tears were left. Kissing his icy cold face broke me; I knew I would never again feel his warmth or see his expressions. We dressed him in a beautiful outfit, placed his dummy and his little car toy beside him, and closed the lid for the last time.
I sat in the back seat with his casket next to me as we drove to the cemetery, where family and friends had gathered from miles away. A beautiful flower arrangement shaped into the letter “A” waited for him, surrounded by bouquets from everyone who loved him. All I could do was follow his casket in silence.
It was so quiet, you could hear a pin drop. His dad lowered him into the ground, and that was the last time we saw our boy.