‘Your son isn’t going to live.’ The worst words a parent can hear, and delivered by our two-month-old baby’s consultant with an unblinking, eye-to-eye stare.
‘He will never breathe on his own and will have no quality of life. We recommend you turn off life support within the next few days.’
I couldn’t believe what I was hearing and, of course, I didn’t want to believe it. Until he’d stopped breathing ten days before, our firstborn child had been happy and healthy. But the consultant’s words were so definite, emphatic and final.
There was no sugar-coating and no hope. The kindest thing would be to let him go, we were told. To disconnect the breathing apparatus and all the wires and tubes snaking over his perfect little body and watch him drift away.
And yet… and yet…
My husband Dan and I had no medical training – everything we knew we’d gleaned from desperate, late-night online trawls through medical journals and phone calls to doctors we knew as friends. Yet we couldn’t accept this was it.
There have been several high-profile cases in the UK of parents refusing to give up on a catastrophically ill child, and fighting doctors all the way through the highest courts to stop life support being withdrawn. We’ve all watched and wept for them, recognising the same fierce determination and blinkered love burning through every legal argument, every point of reason, as they cling to the thinnest scraps of hope.
Were we like that? We never thought we would be, yet over those previous few days nothing the doctors were saying seemed to make sense.
Zephyr was hooked up to life support on the children’s intensive care ward
We’d been sitting either side of our unconscious son at Cardiff’s Noah’s Ark Children’s Hospital for Wales for more than a week. Zephyr had been moving more, and just that morning he’d opened his eyes. For the first time since we’d arrived I’d looked into his beautiful blue eyes and felt my baby was coming back to me.
What if the doctors were wrong?
Dan and I are financial journalists and had spent the past few years living in Egypt. We’d come back to Wales, where Dan is from, for the birth of our first, much-wanted child, in August last year.
It had been a textbook, easy pregnancy and he was a delightful, healthy, happy baby – so robust and chunky. We’d called him Zephyr after our ‘babymoon’ in Greece, where the god Zephyrus controlled the gentle west winds, bringing spring and hope.
Those first few weeks were idyllic. I loved motherhood and Zephyr made it easy for me. He barely cried, loved his tummy time and slept well. Everyone commented on what a perfect baby he was.
He was just beginning to smile and make sense of the world when the unthinkable happened, on the afternoon of October 19.
Dan and I were planning our next move, this time to Spain, and were all packed to go, when we arranged to meet friends for a dog walk.
We stopped for lunch at a pub and sat outside to enjoy the sunshine. I breastfed eight-week-old Zephyr under my jumper as we chatted – then I realised he wasn’t moving.
I wasn’t concerned as I assumed he’d fallen asleep. But when I lifted him up, his face was deathly white, there was a trail of blood from his nose and he’d stopped breathing. It was the most terrifying moment of my life.
In the 40 minutes it took to re-establish his heartbeat, Zephyr sustained extensive brain damage from lack of oxygen
The air ambulance came as my friend, a trained intensive care nurse, performed CPR. In the 40 minutes it took to re-establish his heartbeat, Zephyr sustained extensive brain injury from lack of oxygen.
The police who arrived to shut off the scene took Dan and I to the hospital, warning us to prepare for the fact our precious boy would not live.
By the time we arrived, Zephyr was on the children’s intensive care ward, hooked up to life support.
Seeing him covered in wires, a ventilation tube held by adhesive tape round his mouth, his hair shaved in places and his body so pale and limp, I no longer felt he was my child.
My brain told me this couldn’t be my baby; he must be another little boy who’d suffered a terrible accident.
No one knew what had happened – doctors still aren’t able to give us an exact cause. He had no underlying health issues.
His injury was termed a ‘hypoxic brain injury’, along the same lines as Sudden Infant Death Syndrome – only Zephyr hadn’t died, yet.
His EEG scan showed constant seizures, he was unable to breathe sufficiently on his own when the doctors paused his ventilator for a short time on their daily ward round, and the MRI scan showed widespread damage to his brain.
Yet it still didn’t seem real. Each time the consultants came to deliver more bad news, I would zone out, not entirely believing what they were saying. I was waiting for Zephyr to wake up, when everything would surely return to normal.
I was waiting for Zephyr to wake up, when everything would surely return to normal
The nurses on his ward are among the kindest humans I’ve ever met; they wrote poems for him, made bunting with his name on and created pictures using his footprints.
After ten days of close observation, the consultant told us their team had come to the unanimous decision that Zephyr could not survive his brain injury.
There was no doubt in their minds; Zephyr would most likely die minutes after coming off the ventilator.
I wanted to scream. I wanted to return to the ward, remove all of his wires and sprint past the beds of unconscious children with Zephyr in my arms. All I wanted was my baby back. My body physically ached from our separation. I couldn’t believe he would never grow up.
They warned us to make our decision soon, as it would be wrong to draw this out and prolong his suffering. But what about the improvements we were seeing?
Even on the first night, Dan saw Zephyr open his eyes, despite the fact he was meant to be in a coma. Just reflex movements, we were told, like those he made inside the womb. They weren’t intentional movements coming from his upper brain and were not representative of higher brain function.
The nurses wanted us to spend the next few days memory-making before we said the final goodbye, to make peace with his inevitable fate. I stayed with Zephyr all day, not letting go of his tiny hand.
Not ready to give up yet, Dan sought a second medical opinion. He spent the day getting advice from various doctor friends.
When we sought clarity from Zephyr’s medical team, it became apparent they weren’t able to give clear answers, perhaps due to the complexities of developing baby brains.
It felt surreal to be walking out of the ward with my baby in my arms, after expecting to leave without him
There were some things I could not get my head around, such as how they placed such emphasis on his movements not being intentional, when 90 per cent of movements for babies his age are reflex.
What if his struggled breathing was due to the anti-seizure medication he had been given? If we were seeing tiny improvements in other parts of his body, who was to say his breathing couldn’t improve, too?
Dan was terrified we might act too soon, without adequate knowledge, and not give our son the time and opportunity he deserved. He wanted more facts and evidence and was worried that the doctors were shifting the emotional weight on to me by promising an end to Zephyr’s suffering.
I couldn’t think straight, my brain a cocktail of emotions and hormones. I had carried Zephyr inside me for nine months. This little boy had been a part of me just two months ago. To be apart from him still felt like a physical pain; until this I’d never been away from him for more than half an hour.
We weren’t getting any answers and time was running out.
I was so deeply conflicted. I wanted to give Zephyr all the time in the world, but I didn’t want to prolong his life artificially. As his mother, all I wanted was for my son to be free of pain. For two months he had brought so much joy into the world. Selfishly, there was a part of me, too, that wanted to be free of my own pain, after days of panic, uncertainty and the dawning realisation my baby would die.
After pushing the doctors for more answers, they opted to seek an informal second opinion from an external partner hospital. Their view was the same; Zephyr’s brain damage was incompatible with life.
Our only option was to say goodbye. At this stage, three days on from that initial conversation, we felt we had to trust in their medical knowledge. We knew, too, that the tiny chance Zephyr had of surviving was diminishing with every day that he was hooked up to a ventilator, forgetting how to breathe by himself.
After we made the decision, I felt terrible being around Zephyr – as though I’d given up on my baby, betrayed him. We were moved to a private room. A room to die in.
The afternoon before we switched off his life support, I packed all his toys and clothes into his special blue tiger bag. It was the one I’d brought to the hospital before he was born. I wanted to keep it for ever, to hold my favourite memories of Zephyr.
We decided to turn off life support just after midnight the next day – November 2, 2024 – so he could drift to the stars around the same time he was born: 1.45am. It also meant he would die on All Souls Day, so he would never really die at all. For Christians, it’s the day when the dead return to the living. In a way, he would always be with us.
The night before, we bathed and dressed him in a new outfit before lying down either side of him on two hospital beds pushed together. We played Classic FM, while a projector cast stars across the ceiling.
‘He will forget to breathe and simply drift off. Like dreaming,’ a palliative care specialist told us.
I remember stroking Zephyr’s hands, kissing his pale head and wishing one last time that he would wake up and prove everyone wrong – that I could spend another day with my smiling, laughing baby.
Shortly after midnight we asked his medical team to withdraw life support. For the first time in weeks, Zephyr was free of wires, tubes and plasters. I could see his beautiful face once more. Part of me wanted it to happen quickly so I could escape my pain.
For the first minute or so, his breathing was incredibly laboured. Harsh, shallow and slow breaths, with long drawn-out gaps. Two-month-old babies usually breathe around 40 to 60 times a minute; he was breathing about seven or eight times.
I began counting the longest gaps between his breaths, thinking each one would be the last, but they kept coming, minute after minute, hour after hour.
At one point, Dan and I must have dozed off and then woke in a panic, terrified we’d missed Zephyr’s final moment. But no – there he was, still breathing. The gaps getting shorter and shorter.
Around midday a decision was taken to feed him some milk via a tube. To everyone’s surprise he had survived for 12 hours. He was breathing on his own and not erratically. The consultants told us this was unexpected, but part of the dying process. He wouldn’t last much longer.
But we were also listening to the nurses, who had spent every waking minute with Zephyr.
They were careful not to give us false hope but they had also noticed the encouraging signs he was rallying.
I barely let myself hope, but I felt my baby was telling me he wanted to live. How could I not listen? Hours turned to days, and he kept on getting stronger, showing more signs of life-like movement and staying awake for longer.
His medical team kept trying to persuade us to move him to a nearby hospice to die there, but we resisted. We believed now he would survive.
After five days of waiting for our little boy to die, it was the very same consultant who told us there was no way Zephyr could live who now told us he would survive.
With little explanation for this volte-face – and no apology for what we went through – they gave no indication of what Zephyr’s future would look like.
But we felt no anger or frustration, just pure, unadulterated joy that our strong little baby had made it through.
After just over a week, we were moved from Cardiff to Addenbrooke’s hospital in Cambridge, where my family live, and Zephyr continued his recovery there.
It felt surreal to be walking out of the ward with my baby in my arms, after expecting to leave without him.
‘The doctors were wrong. He’s going to be OK,’ a nurse whispered in my ear.
We were able to pick up the threads of our plans to move to Spain and we’re here now, enjoying the beautiful spring sunshine, and treasuring every moment with Zephyr
We spent two weeks at Addenbrooke’s, where Zephyr continued to breathe unaided, and soon we were able to bring him home. I packed up his tiger memory bag one last time – now with new memories.
Upon his discharge, Zephyr’s doctors were still unable to give us a diagnosis or tell us exactly what his future might look like.
Despite their earlier warnings about the brain damage he sustained, there is still much that is unknown about the developmental capabilities of the infant brain.
We were told to focus on the present, as so much could change – for the better or the worse.
The most important thing was to make sure that Zephyr kept gaining weight, continued to improve his breathing and started to move more.
As time passed, and we continued with Zephyr’s weekly physiotherapy check-ups, I’ve remained hopeful; after all, he’s proved doctors wrong once already.
Recently, we were able to pick up the threads of our plans to move to Spain and we’re here now, enjoying the beautiful spring sunshine, and treasuring every moment with Zephyr.
At seven months, he’s a happy little chap who’s learning to sit up and showing signs of starting to crawl – a little late for his age but making more progress than was ever thought possible. We’re so proud of every milestone.
We have no idea what his long-term outlook will be, and his doctor says it’s too early to know, but he is showing clear signs of improvement every single day.
I’ve found the Spanish medics who have taken over his care have a much more positive outlook than we experienced during our time in hospital.
I can’t feel any anger for what happened, even towards the Cardiff medical team who said he would never live. After all, they kept him alive when he was critically ill.
We’ve since been told that leaving him on life support for longer could have been much worse for him, and that by taking him off when we did, we gave him the best chance.
Zephyr’s speech and language therapist and physiotherapist here in Spain are impressed by his improvement every time they see him.
His little body is getting much stronger and his doctor told me this week she sees no reason why he won’t be able to walk, something the intensive care team told us would never be possible.
What’s most important is that he wants to live and he’s determined to survive.
As his mother, I’m going to follow his lead and give him the best chance possible.
A spokesperson for Cardiff and Vale University Health Board said: ‘While we are unable to comment on individual patient cases, we acknowledge how difficult this time has been for Zephyr’s family and would encourage them to contact our dedicated Concerns team should they wish to discuss any aspect of his care.’
