‘Ezra is sick and I can’t get to him!’ We sat in tears while they operated on him in front of us.’: Mom loses baby to Congenital Leukemia, ‘He worked so hard to make sure we got to meet him’

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“I’m not entirely sure how far I would need to go back to tell Ezra’s story, but I’ll start at Christmastime. Martin and I fell pregnant VERY quickly, before we’d even ‘officially’ got together, so we never got to do things ‘normal couples’ would do. We thought we’d squeeze in 2 nights away in Belgium, 7 weeks before our due date. We joked often, ‘Knowing our luck he will come early, and we’ll be delivering our son on the Eurotunnel!’ I kid you not, the minute we pulled onto the train, I started getting twinges I’d never felt before. But I just blamed it on being in the car too long.

Courtesy of Chloe Simmons

We got to Bruges and had a walk around the Christmas markets. At this point, my twinges became full on cramps. Within a half an hour of our walk, I was doubled over in pain. We did some googling and blamed it on Braxton hicks, combined with me just being rubbish at handling pain. By our third day, I was unable to walk from the shop to the car. It literally felt like the baby’s head was in position, ready for me to cough and he would arrive (wishful thinking now I’ve experienced labor). We made the very uncomfortable journey home, listening to Stacey Solomon’s podcast about parenthood, as it was starting to feel like becoming parents was coming sooner rather than later.

The cramps persisted for a week and were sometimes unbearable. I rested, but by the 28th, we were starting to get worried, so we made our first of MANY hospital trips. They stuck me on a monitor and tracked my baby’s movements. My heart rate was high, so they kept me under observations and gave me water until it dropped enough for me to be discharged. Three days later, I had my bloody show (sorry for the men reading this, too much information, I know), so we were back at the hospital. I was given steroids, to make sure baby’s lungs were fully developed, and kept in overnight. They monitored his heart rate and movements, which were mostly fine – some concerning moments, though. For the whole 24 hours I was in the hospital, my heart rate was through the roof. I was discharged (rather reluctantly) and told to come back in a week for a scan to check on the baby.

Scan day came around, and we were nervous. My belly shrunk completely, and our baby was hardly moving.  The last scan, the minute he put the monitor on my belly, he got a picture of our son with his hand around his willy. He started taking all the measurements he needed, but seemed stressed and kept re-checking it. He eventually started laughing and explained the reason he checked so many times was because, ‘baby is measuring like a full term 8lb baby at 8 months!’ He said I needed another scan in a weeks time, and I should see a consultant to make a plan.

He’d noted the baby’s head and belly were abnormally large compared to the size of his legs and arms. At the time, it seemed hilarious. We’d often joke about how he’d inherited his dad’s huge head and we would have a bobble-head baby. We went for a second scan, hoping she’d ease my nerves about delivering a giant baby. But she’d agreed with the previous sonographer, and estimated him at 9lbs with 3 weeks still to go. She also noted his belly had grown again, at a drastically quick rate. Just more giggles about what a fat baby we had made.

Courtesy of Chloe Simmons

I could not walk, due to excruciating pelvic pain. My cramps had been going on for 3 weeks and were getting more and more painful. I was anxious about being able to deliver such a big baby, and then there was a diabetes scare on top of it all. I also had an awful pregnancy. Deep down I think I knew I didn’t have normal pregnancy symptoms, but I had a record for being over-dramatic, so I just kept telling myself everything was normal. I was SO weak, and I couldn’t walk anywhere without getting exhausted. I was dizzy, passing out, pale, my hair was breaking off, and I was throwing up blood – for months. So it was music to my ears when the consultant agreed I would have to be induced at 38 weeks.

On the 1st of February, we made our way to the hospital to have our baby. We were SO excited. Well Martin was, I was full of fear. But surely it is normal for someone going into labor and expecting to push out a potentially 10lb baby. I was adamant I was going to do it naturally. Maybe just some gas if things got bad (because SURELY labor can’t be THAT bad). The worst thing I thought could happen was me needing a C-section. I so badly wanted to have the full labor experience. At 11 a.m. I had my first dosage administered to bring on labor. I was going to have my baby! Ha! Well, I cannot explain to you want an anticlimactic moment being induced is. 12 hours went by with only a few tiny twinges.

I get my second dose, along with my third cervical sweep. On the subject of cervical sweeps, they are far more than ‘slightly uncomfortable!’ They were horrendous, by far the worst part of the whole labor. Another 12 hours goes by with very broken sleep. At one point, I woke up to Martin asleep on the floor, and the nurse trying to navigate the machine around him to take my observations. So at 11 a.m. on the 2nd of February, I had the last dose I was allowed and was told I was only a half cm dilated. That’s only 5mm in 24 hours!

I was determined to get the baby out on Sunday. The date was 02.02.2020, which read exactly the same backwards. It would have been the coolest date of birth, so I tried EVERYTHING to make it happen. I tried the yoga ball, long walks around the hospital, climbing stairs, squats, and spicy food (literally just jerk chicken as I just cannot handle spice). Funny enough, the jerk chicken jerked the baby enough for the contractions to start. I don’t know what time they started. 12 hours after my final dose, and probably about 5 hours after the contractions started, I was due for another sweep… I was FINALLY 2cm, which meant I was in full labor and could go onto the labor ward to give birth.

By this point it was 11 p.m. on the 2nd of February. I had been up for about 40 hours, give or take a few naps. By the time I was settled in my room, and the midwives had introduced themselves, I was in full blown contractions. For a girl so adamant on not having drugs, I was ready for some serious medication! This was like no pain I had ever felt before, so I was going to town on the gas.

I was awake at around 8 a.m. with contractions in full swing. After my examination, I was put on an epidural. So much for drug-free labor. That stuff was magical, although I didn’t realize the implications it might have. For the next 6 hours or so, I was completely pain free, so I tried to get some rest.

One of my monitors was going off constantly. The midwife would keep getting up and turning it off. When I say it was constant, it got to a point where 2 midwives sat at a monitor, constantly just watching my heart rate and turning the alarm off every 5 minutes. It wasn’t until mid afternoon they noticed the baby’s heart-rate was being affected, so they called for a doctor to review. He seems good at what he did, yet was awful at the whole patient/relationship thing. I don’t think he looked at me once, just spoke about me as though I wasn’t laying right next to him. He explained to the midwife, ‘Her high heart rate is probably due to an infection, and it’s likely it had been passed to the baby.’ I was put on an antibiotic drip mostly as a precaution and told the baby would need antibiotics immediately. Not ideal, but at least he wasn’t taking me for a c-section. FINALLY, at 8:30 p.m. on the 3rd, it was time to have a baby.

Martin held my head while I pushed to contractions I couldn’t even feel. The midwife watched the monitor, told me when one was coming, and I’d go to town. I think after two pushes the midwife said, ‘He’s coming!’ After about 10 minutes of pushing, the baby’s heart rate began to drop, and so did my contractions. They called for doctors, and within a minute, the whole room filled. I was put on a strong drip to get my contractions going again, had 2 midwives rubbing my belly, and a few doctors at the business end of things. Things got a little crazy, and I could see them getting anxious about baby’s vitals. I was told to give the biggest push I could and then they would decide what to do. So I gave it everything I could, and while I regained my breath and energy, they attached a suction cap to the top of his head without me knowing. With my next push, the doctor pulled on Ezra with everything she had in her. I remember looking at her and just thinking, ‘What the hell are you doing?’ It did not seem natural! The cap popped off with an awful noise, like a champagne cork, which is not the noise you want to hear when your delicate little baby is involved. She reattached it and we went one more time. I was told I had to get him out soon, and could sense it was getting urgent, so I gave it every thing I had. My baby boy was finally born at 9:19 p.m. He was put on my chest, but I still couldn’t see straight from delivering a baby within 25 minutes. I remember thinking, ‘I can’t hear him cry,’ and I couldn’t see his face from the way he was positioned. They quickly took him off me and put him in the incubator. It felt like forever until I finally heard him make a sound. I looked over to my mom, with tears in my eyes, and asked if he was okay. She told me he was perfect.

Courtesy of Chloe Simmons

The doctor worked on Ezra for what seemed forever. Giving him a bit of oxygen, administering his antibiotics, doing his heel prick and checks. My mom and Martin took turns to be with him and then came back to the bed to check on me. I kept insisting I was fine and to just stay with Ezra. I was given an injection to quickly deliver the placenta, because I was losing a lot of blood. My placenta would not come out. The doctor was literally tugging at it, and could not get it out. From what I recall, it took longer to deliver the placenta than it did the baby. When she finally got it out, every one in the room was in shock. Both the doctor and midwife said it was the biggest placenta they had ever seen. It was bigger than the baby – he was only 8lb 1oz in the end. At the time, I thought nothing of it, other than it must have been the reason I had so much pelvic pain with all the added weight. I was being stitched up as the baby doctor was finishing up with Ezra. She asked for a hat to put on him, as his head was swelling. I vaguely remember someone’s baby having a swollen head after birth years ago, and mom telling me it was normal with some deliveries, so I wasn’t worried.

He was so perfect. His eyes were beyond beautiful. I have never felt as happy as I did in those moments. He was very sleepy, but was pouting his lips, desperate for food. The student midwife came in and helped me breastfeed. She told me how to lay him and where to hold his head, and he instantly latched on with the biggest mouthful of boob. Easy! He had a few sucks and then lost his latch with a cry. I kept trying to get him back on, but he just was not getting it this time, and he was getting more and more frustrated and upset. I tried to stop him crying, comforted him, but nothing was working. Mid-cry he was making a grunting noise. I thought it was just him catching his breath, but the midwife seemed a little concerned. She took him and tried to settle him by walking around. She gave him to Martin for a cuddle while she went and asked for advice. Minutes later she came back in the room and said she was going to try feeding him formula, to get something in him. He did take a little and stopped crying. But as he stopped, we noticed he was still making his grunting sound, and it was more often. She placed him in the incubator and called for a doctor to come and check over him.

Some time passed with him being in the incubator with his dad by his side, and no doctor came. The midwife left the room to find them. She came back in and said they were busy but would be there soon. This happened 2 or 3 times before a doctor arrived, almost an hour later. By this point, he was grunting relentlessly. I messaged my friend who is a midwife and said he was grunting, and she said it is a red alert symptom in a baby. The doctor agreed it would be best to take him to the NICU, so he could have more attentive care than he would have in the postnatal ward with me.

In a short while, one of the doctors ran into my cubicle. She asked if anything out of the ordinary happened during my pregnancy and seemed so rushed. All I could think of was a chest infection I had for about 2 months. She said no, nothing like that. It had to be something more. But I couldn’t think of anything. Then she said words which would resonate with me forever. It’s not even what she said, it’s how she said it. She didn’t want to say it! She awkwardly came out with, ‘I think you should come to the NICU. Your son is doing very poorly.’

The underlying tone was, ‘You need to see him now before anything bad happens,’ although I still didn’t want to believe it was anything so serious. He only went for a little oxygen, after all. I told Martin to go and check on him, as I still couldn’t walk due to the epidural. He’d been gone minutes when I just started feeling sick to my stomach. I phoned my mom, not even 2 hours after she’d left, in absolute hysterics. I don’t even know what I said, but it was along the lines of, ‘Ezra is sick and I can’t get to him!’

Courtesy of Chloe Simmons

I sat at the door of the room Ezra was in with 4 other babies. I tried to see what was happening, but he was in the furthest corner of the room. A nurse came over and said we could go in, but all the doctors were running around Ezra’s tank, frantic. We didn’t ask anything, because we wanted them to stay focused. So, we just sat at the end of his tank in tears for what seemed like hours, while they literally operated on him in front of us. The senior doctor eventually explained, ‘Ezra has bleeding on the brain that we can’t stop.’ He had wires fitted all round his arteries to try and get medicines and transfusions in quicker. She asked me so many questions about what I did during my pregnancy, as if something I had done may have caused it. The only thing they could suspect was maybe I had given him an infection.

The doctors worked on him for hours. We started to feel like we were in the way, so we left the room and watched on from the doorway with my mom. I was staring, completely zoned out in disbelief as to what was happening, but still hopeful he would pull through. I had known loads of babies who had been in the NICU and came out fine. I hadn’t noticed the doctors resuscitating Ezra. It wasn’t until later on, they said it had taken 5 minutes to bring him back to life. Martin and mom had both seen it happening but didn’t want to tell me.

At this point, it was the morning of the 4th. Both our families had come to support us and were sitting in the hallway waiting for news. We were called into a room with the new doctor who had taken over for the day shift, and he told us, ‘You have no options.’ They had given him so much medication. He’d had 3 blood transfusions and just kept bleeding out. He was brain damaged from all of the internal bleeding. He’d had every scan he possibly could and they had not a single clue as to why this was happening. We were told they were going to try one more blood transfusion, and if it didn’t work, they believed the kindest thing to do was to turn his life support machine off. There are no words for how heartbroken we were.

Courtesy of Chloe Simmons

My chest still hurts now, the same amount it did when we got the news. We agreed it was best to turn his life support off at the end of his blood transfusion. I sat by his tank and sobbed for the last few hours I had with him. Our family came in one by one and said their goodbyes while he was still with us. As his transfusion was coming to an end, we asked for some time with him alone. Just a mom, dad, and our son. We watched as his vitals dropped, and we both knew what was happening. As the doctors were in their meeting, finalizing their decision to turn his machine off, Ezra passed away in his sleep. I’m not going to describe the emotional state we were in, I’m sure you can imagine. They cut off all his wires, and handed me my son for a last cuddle.

I could not let him go. That last cuddle lasted hours. We were moved to a bereavement room, which has a double bed, and we invited our whole family in for a last kiss goodbye. No one spoke. We all just sat and stood around the room crying and looking at his precious face. He was so swollen from all the internal bleeding and looked completely different from when he was born. Everyone said their goodbyes and left us to be a family for a few hours. At this point, I had been awake for days. I lay down with Ezra and Martin, and cried myself to sleep with him in my arms. We must have been asleep for a good hour before a nurse came in and woke us to take prints of Ezra’s feet and hands. The doctor came in to tell us Ezra’s blood results were back. His white blood cells were 150,000 and he had pretty much no red blood cells. He went on to explain how it is the kind of results you would see in an adult who had a highly cancerous tumor. He couldn’t confirm Ezra had cancer, but it was what they suspected.

We were told the bleeding on his brain was likely caused by the suction cap, and because his blood was so poor quality, it could not clot, which is what led to such severe internal bleeding. He left us to spend our last hour with Ezra. I got to bathe him, which Martin didn’t want to be around for, so he went and had a cigarette. He felt guilty leaving me, but in all honestly, this time was so precious. I chatted away to Ezra as I undressed him. Nothing could have prepared me for what his once pure and delicate naked body looked like. He was head to toe covered in bruises. Both of his arms were black and blue from simply being picked up. His chest had the biggest, darkest bruise in the center, from where they resuscitated him. Even his legs were covered from where they had used their fingers to lift them to change his sheets. Any tiny touch bruised him. My heart broke at seeing him that way. I dressed my son for the first and last time, and said my goodbyes.

Courtesy of Chloe Simmons

We were given a room in the birthing center to rest for the night, as I had lost so much blood and still had to be monitored. Doctors and midwives from the whole pregnancy journey came to pay their respects. They all confirmed it was suspected Ezra was born with Leukemia and the suction cap had caused a subdural hematoma. We were told his body would be taken to a coroner and an external investigation, which we are still going through at the moment. We were going to wait until we had written confirmation on his cause of death, but with Covid-19 slowing everything down, it could take many more months than expected.

The coroner called to confirm their results, which showed Ezra had Congenital Leukemia, a condition which affects 1 in 5 million babies. The reason the doctors couldn’t get to the bottom of why he was so ill, or know how to help him, was because they had never seen it before. No one had seen it. Some hadn’t even heard of it or knew it was possible. I couldn’t help but wonder how I had made such a sick baby. It is an absolute miracle he made it to birth and long enough for us to hold him. A midwife explained to me my placenta was keeping him alive. I mentioned how everyone was shocked as to how large it was, and she said if the placenta needs more space to produce goodness for the baby, it will just continue to grow. That’s why I was so drained and sickly. My body was working so hard to keep my son alive, as he worked so hard to make sure we got to meet him.

We always knew our boy was going to be one in a million, but we never expected him to be 1 in 5 million. The reason we have chose to fundraise for Children with Cancer UK is because there is still SO little research into children born with cancer. Google Congenital Leukemia. There is nothing more than a few case studies. Pretty much every child who is born with this is left with guess work to try to keep them alive. No one knows why it happens, or what causes it. In this day and age, it’s crazy to think there is still so little knowledge on things like this, and research cannot be carried out without specialist funding. When we went into deliver our baby, we thought the worst possible thing which could happen was a c-section. We didn’t think losing him after birth would be possible. Yet it happens to SO many people. Even though we lost Ezra, we don’t love him any differently. I want everyone to know what an amazing and beautiful little boy we had.”

Courtesy of Chloe Simmons

This story was submitted to Love What Matters by Chloe Simmons. You can follow her journey on InstagramSubmit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

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