zenmama

The morning after my baby’s birth, I woke up feeling rested for the first time in over a week. No contractions had pulled me from my sleep. For one confused moment, everything felt normal. Then, I remembered. My baby was here, but he wasn’t with me. He was two floors down, in the NICU, and still fighting. 

This is part three of our chylothorax journey. You can also read parts one and two.

Seeing him in the NICU for the first time

When my husband arrived at the hospital, I excitedly asked if we could visit our baby at the NICU. He gently held my hands and calmly told me that our baby looked really fragile and I had to prepare my heart for what I might see.

After lunch, the nurses wheeled me down to the NICU in a wheelchair with my husband trailing along beside me. I was eager to meet my son, and my heart raced as I was rolled down a corridor of rooms with fragile-looking babies sleeping in their incubators. 

Then, I saw him. Small and frail, lying in his incubator. Intubated. Surrounded by too many wires and tubes attached to his tiny frame. One of the tubes was inserted on the right chest which fed to a pleural drainage system. The system continuously drained the fluid and treated his chylothorax by allowing the leaking lymph duct time to heal. An eye patch covered his eyes while blue phototherapy lights shone down on him to treat his jaundice. His tiny arms and legs were gently secured so he wouldn’t accidentally pull at the life-saving tubes and wires connected to him. 

He was asleep, but I noticed he seemed to be in discomfort, and fidgeted a lot. I learnt that while he was in stable condition, he was on a low dosage of morphine so he wouldn’t feel much pain. I felt a pang of guilt—my body was supposed to be a safe haven for my baby to grow and develop, and yet, it couldn’t keep him in my body longer. Looking back, I realise I never truly had the chance to sit with that guilt. My instincts immediately thrust me into survival mode. There wasn’t time to fall apart. My baby was fighting for his life, and I needed to keep going. That was also the beginning of my own NICU trauma. Even today, I still catch myself worrying constantly about his development and health, and overprotecting him more than I’d like to admit.

The neonatal team encouraged us to gently hold our baby’s tiny hands. His fingers could only curl halfway around my index finger then. My heart ached and I hoped with all my heart that he would pull through.

Discharging from the hospital without my baby

Going home after the birth of my second son was one of the hardest parts of the entire experience. I had become a mother of two, yet I found myself doing all the things a new mother does; waking up through the night to pump milk, washing pump parts, and labelling and carefully freezing every drop, but without a baby beside me. That kind of uneasiness is difficult to put into words.

Still, I knew I had to keep going and be strong for my children—one fighting for his life in the NICU and my firstborn who had just spent weeks without his mum, and needed me too. My husband had carried our family through the uncertainty of my pregnancy complications, and now it was my turn to help carry him.

No easy road to recovery

We visited our baby at the hospital at least three times a week, about three to four hours each time. We held his tiny hands and hoped with bated breath that his recovery would be smooth. In between, we wrestled with medical jargon and tried to decipher the numbers beeping on the monitors. There was no magical golden period of skin-to-skin contact with my baby—instead, I had to ask the NICU nurses for permission just to hold him.

The joys of having a newborn were replaced by anxiety, and learning about his seemingly endless string of health complications, watching him through the walls of his incubator, and listening to the steady beeping of monitors that echoed through my heart.

The return of the fluid in my baby’s chest

The fluid that had been drained just before delivery returned immediately, and a pleural drainage system helped to drain it from my baby’s chest. Thankfully, the lymphatic duct stopped leaking, and the drainage system was removed after two weeks.

The shunts in my baby’s chest

The shunts inserted during my second procedure were supposed to be removed at birth. Unfortunately, my active baby must have danced so hard in my belly that he knocked them both into his body, and the only way to remove them was surgery. Two weeks into his life, my baby went under the knife. My heart broke as we signed the consent forms, decisions no parent imagines making for a child so small. Thankfully, both shunts were removed successfully.

My baby had to fast

For the first two weeks of his life, my baby couldn’t drink breastmilk or regular formula. Both contain a type of fat that the body turns into chyle; the very fluid that had been leaking into his chest, and feeding him either could cause the chylothorax to return. The neonatal team needed to be certain the lymphatic duct had fully healed first. Until then, his only nutrition came through an IV drip.

When his feeds finally began, it was with a special formula with fats his body could absorb without producing chyle. My husband and I were also allowed to hold him once he was on the special formula too! We were overjoyed to hold him in our arms for the first time. He looked up at us, snuggled close, and fell soundly asleep.

Needing oxygen support

My baby was intubated for his entire first month. Seeing a large tube pumping oxygen through his mouth into his tiny frame filled me with anxiety. Did it hurt his vocal cords? When would they remove it? He couldn’t even turn his head while intubated, and he was clearly uncomfortable. As his mama, it hurt that I couldn’t protect him from the pain, or tell the nurses to stop hurting him, knowing full well they were saving him.

When he was finally extubated, he did well, needing only a CPAP (Continuous Positive Airway Pressure) machine to support his breathing through his nose. He looked so much more comfortable—he could move and turn his head freely, and he no longer needed morphine to numb the pain. We also finally heard him cry! It rang loud and clear, and we could hear his distinct cries from the very end of the NICU.

We hoped he could come home soon

After my baby was extubated, we let ourselves hope. Perhaps we could take him home soon. Perhaps the rest would be smooth. But the setbacks kept coming—one moment he seemed to be doing well, and the next, a new complication needed attention. As a parent, it felt like a never-ending string of bad news. What helped me was reframing each one: he is fine. This is just a little setback. He is going to be okay.

These were some of the complications that needed medical attention.

Contracting NEC

About two weeks after being extubated, while on the special formula, he contracted Necrotising Enterocolitis (NEC), a severe and potentially life-threatening gastrointestinal disease that mainly affects premature and low birth-weight babies. It inflames the intestines and can damage or destroy intestinal tissue, sometimes causing a dangerous hole in the bowel. The neonatal team found blood in his stools and immediately stopped his feeds for a week. He was back on IV drips, hungry and irritable, and my heart broke all over again. Thankfully, he recovered quickly and his intestines were undamaged.

It was during his recovery that something in me shifted. Since there had been no sign of fluid leaking for weeks, my mother’s instinct told me he might be ready for breast milk. For so much of this journey, I had felt like a bystander to my own baby’s care—but this time, I asked. I raised it with the neonatal team, we discussed it together, and they agreed to start him cautiously on breast milk. He tolerated it well. It was a small decision in the scheme of things, but it was the first one that felt like mine, and I held onto it.

Contracting MRSA

On breast milk, he seemed to thrive, and the team slowly adjusted the CPAP settings to wean him off oxygen support. The doctors said he was largely breathing on his own, and the machine was just extra support to strengthen his lungs. At one point, he even graduated to a bubble CPAP, which delivers a gentle, continuous flow of oxygen bubbled through water.

Then he contracted MRSA (Methicillin-resistant Staphylococcus aureus), a contagious bacteria resistant to many common antibiotics. He was moved out of his shared room with three other babies, and “upgraded” to a single room for the rest of his NICU stay. We joked about his private suite, but underneath the jokes, we were frightened the bacteria could enter his bloodstream and turn life-threatening. Thankfully, it never did. Since contracting MRSA, we were once again not allowed to hold him. Instead, we had to don protective gowns and gloves. It wasn’t fun holding his hands or snuggling him through protective gear.

Diagnosed with chronic lung disease

The months of fluid pressing on his developing lungs had left their mark: chronic lung disease. It only became apparent when the neonatal team paused his oxygen support completely for two nights, and his oxygen levels plummeted. A chest x-ray showed crease-like folds on his lungs. The team reassured us this wasn’t a major cause for concern, as he should outgrow it with age.

Struggling to drink milk from a milk bottle

Premature babies, we learnt, often can’t yet coordinate suckling and breathing at the same time. When my baby first started on the bottle, he would get so excited that he’d forget to breathe, tiring quickly, and turning blue in the face. His oxygen numbers would plummet, and the alarms would ring and flash red through the room. The neonatal team would hear the alarms and dash over, and stabilise his breathing by gently tapping and brushing his back—a motion, we were taught, that snaps him out of it. Nothing prepared us for watching our baby go limp and blue, with alarms screaming the danger we already felt in our bones.

The light at the end of the tunnel

About three months after his birth, he could finally drink steadily from the milk bottle without needing any oxygen support from a CPAP or bubble machine. It was such a relief when we could finally bring him home! Our firstborn was so excited to finally meet his younger sibling too and showered him with countless hugs and kisses. He transitioned well into big brother mode, and I would occasionally find random toy cars in my second born’s crib!

I realised that bringing our son home wasn’t the end of our journey—it was the beginning of a different one. We still worry whenever he catches a bug, and our hearts race a little faster. But every laugh, every cuddle, and every milestone reminds us how far we’ve come. Looking back, I realised something I couldn’t see then. My baby wasn’t the only one recovering. We all were. Each of us had lived through the same story in different ways, and together, we slowly found our way forward.

If you’ve found this series because your baby has just been diagnosed with chylothorax, I’m so sorry you’re going through this. I remember searching endlessly for stories from parents who had walked this road before us, hoping to find even one family who had come out the other side. I hope that by sharing ours, you’ve found a little comfort, a little hope, and the reassurance that you’re not alone.

** This article concludes my three-part series about our family’s journey with chylothorax. Everything shared here is based on our personal experience. Every pregnancy, every baby and every medical journey is unique, so this article should not be taken as medical advice. If you have concerns about your own pregnancy or baby’s health, please speak to your healthcare team.**