Arlo’s Story

Arlo was born on 24th August 2022 at 25+5 weeks after I went into spontaneous labour at 25 weeks. I spent five days in labour at Queen Alexandra Hospital having multiple rounds of steroids to help his lungs grow and magnesium sulphate to help prevent Arlo from having any brain injuries. In the days leading up to his birth, we were told about the potential outcomes of this preterm labour: I could have him ‘naturally’ but there was a chance his head would get stuck, and we would lose him or I could have a C-section but due to his gestation, there could be complications for future pregnancies.

Arlo’s premature birth 

He decided to make his entrance on Wednesday afternoon. There were 15 people at the end of the bed when I was ready to deliver. They scanned me one final time and he was in breech position. It took 40 minutes from the moment my waters broke until the bottom half of his body was out. It was the longest 40 minutes of my life. His arms were stuck behind his head and his cord wrapped around his neck. They unhooked each arm and then the cord and he was here: 24/08/22, 14:40, weighing 940g. 

I saw the top of his head before he was taken to be intubated and then off to the NICU (Neonatal Intensive Care Unit). I had a retained placenta, lost two-and-a-half litres of blood and was taken to surgery. Once I’d come around, I was finally able to see him at 10pm that night. The days and weeks that followed were the absolute worst days of our lives. 

The first 9 days were fairly ‘straightforward’, apart from feeling like I was ten steps behind everyone, trying to get my brain to catch up with what had happened to my body and this tiny little, bird-looking baby, was mine.

Transfer to Princess Anne Hospital

On the morning of day ten, we received a call informing us that Arlo had sepsis and would need to be transferred to Princess Anne Hospital so the surgical team could check his gut and operate if need be. This is what I thought was the worst day of my life, little did I know what was around the corner for us. I spent the day at Arlo’s beside sobbing, wondering why us, why my baby, why now. We were transferred by ambulance at 8pm that night. I was allowed to travel with Arlo but in the front which felt a million miles from him. 

We entered the NICU and it was worlds away from Queen Alexandra Hospital. Smaller, more cramped and wires everywhere. They sent us to the family room whilst they got Arlo transferred and settled. A nurse came to get us what felt like hours later and we could go and see him. We walked in like rabbits in the headlights all over again and I just remember thinking which one is my baby. How do I know he has not been swapped? How will I recognise him? He had a hat on, goggles over his eyes, and a tube in his mouth and I just felt like I had no idea what my baby looked like or if the baby they told me was mine, was mine. 

We stayed until 2am and then got a hotel nearby for the night. We got the all-clear on the surgical side the following morning but were told he would need a lumbar puncture to rule out meningitis. 

The best moment of my life - holding Arlo for the first time

I was finally able to hold Arlo for the first time when he was 11 days old. It was the best moment of my life. Only it was quickly ruined with the news that the fluid they had taken in the lumbar puncture was yellow which indicated meningitis. The first of many big blows. He was treated with five different antibiotics until they could decipher which type of meningitis this was.

It felt like Arlo was fairly stable after this until a routine brain scan (he had one every ten days) at four weeks old. My husband Lewis had returned to work at this point, and I was taken to a side room and given the devastating news alone. 

Devastating news

The scan showed a build-up of fluid in his ventricles which meant they had grown and there was substantial pressure in other areas of his brain as a result - blow number two. An MRI scan was booked immediately to investigate further. It was the first of many times I would have my baby sedated and taken away from me by strangers in a travel incubator. 

The MRI showed a significant bleed in the cerebellum - blow number three. We had conversations with consultants and surgeons that no one should have about their child. I silently sobbed my way through these conversations, fixating on the words ‘you should prepare for the worst’. 

There were three or four different options for Arlo, one of which was surgery which seemed the only option for us with potentially the best and worst outcome, but we had to do something. He would need a ventricular reservoir fitted and then once he was over 2kg, he would need a second surgery to fit a shunt.

Neurosurgery

Neurosurgery on my tiny, tiny baby. We were told that because of the size of the bleed, he had had there was a high risk of him bleeding out during the surgery, but we had to try. The alternative was to do nothing and wait for the inevitable. 

We were told that he would have 48 hours to recover after the surgery and then 72 hours to come off the ventilator. If he could not do that then there was nothing more that could be done. The machines would be turned off and they would let nature take its course. 

The surgery was booked for the following day. At this point, there was no visiting on the ward so none of our family had met Arlo, but we were told to get our families in to meet Arlo and say goodbye. He had started having seizures at this point due to the swelling and his heart rate was extremely high. All I could do was sit by and watch. The phone calls to our families were awful but everyone made it in time and got to say their goodbyes.

We stayed with Arlo until 2am. We got him dressed in tiny clothes for what we thought was the first and last time. The nurses talked us through what would happen if we lost him, that they would keep him alive so we could say goodbye and that we could spend the night with him after he had passed. That we could bath him and get him dressed. 

It’s just the most horrific conversation to have about your baby. I didn’t sleep that night, we stayed on the ward to be close to him.

The longest three hours

The morning of his surgery, I was the most nervous I have ever been for anything. They prepared Arlo and put him in the travel incubator again. He was wheeled out of the unit leaving us behind. I went back to his incubator and changed the bedding for what could be the last time. It was the longest three hours until he came back to us. 

We got the call to say that the surgery had gone well: he had not bled out and he was on his way back to us. The best, best, best outcome, but still five days to get through for him to make a U-turn. It felt like an enormous amount of pressure on such a tiny baby. We had five days of cuddles and waited to be told what was going to happen. He came off the ventilator on day two and we went from there. 

We spent another seven weeks at Princess Anne Hospital before coming to our home hospital in Poole for seven days. 

Bringing Arlo home

We brought our boy home on 30/11/2023 after 13 long weeks and two days before his due date — our miracle angel boy, defying all the odds. We are eternally grateful to every single person who had any input into Arlo’s care and saving our boy's life.

Arlo’s mum Ellis is now volunteering as a NeoHero with Ickle Pickles and you can help, too. Find out how to get involved here. 

Lewis and Ellis have raised over £8000 for ten height-adjustable cots and a saturation monitor for Princess Anne Hospital. Arlo’s story was also published in Chat magazine as “A Letter to our Ickle Pickle…” to help raise awareness of prematurity and the Ickle Pickles Children’s Charity. 

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