2018 was set to be an exciting year for Sarah and Chris. They’d recently moved to Llantwit Major, Sarah had just launched her own business and they were eagerly awaiting the birth of their first baby in the spring. But a few weeks in to the New Year, on the morning of her 25 week check, Sarah realised she was bleeding. The midwife who saw her at the clinic referred the couple straight to the hospital in Bridgend where tests revealed that Sarah was in early labour. She was given injections to try and slow down labour, medication to help mature the baby’s brain and lungs and told that she might deliver before the end of the day. In the space of just a few short hours, Sarah and Chris’ lives changed forever.
Sarah says: “I started shaking uncontrollably at that point, out of shock I think more than anything. And it was then that the midwife whispered words in to my ear that I think helped to save all three of us in the days that were to come. She hugged me really tight and told me that I couldn’t cry now. She said that my stress and adrenaline could speed up labour and my job was to stay as calm as possible. In a situation that was suddenly and very dramatically out of our control, it gave me a focus.”
Sarah and Chris were rushed to Cardiff where they were prepared for the imminent birth of their baby. But the medication to slow the progress of the labour seemed to be working and by the Sunday evening, there was hope that the pregnancy might progress, for another few weeks at least. The following morning, Sarah woke up in a pool of blood and was convinced that she’d lost the baby. An examination revealed that she was 4cm dilated. The baby was still alive but she was now in full labour.
Sarah says: “From then on we were on one major countdown. We knew that every minute the baby stayed inside would help so we celebrated each hour that passed. But the pain got worse as the days progressed and by the Friday, we knew that there was no stopping the inevitable. I was told to push when I was ready and I remember Chis saying – ‘Whatever happens next, our baby is about to be born.’ In that moment we felt so happy.”
Baby Max was born tiny but breathing, though it took some time for the neonatal team to get all the necessary tubes in to him. Chris and Sarah couldn’t see Max from where they were, so they avidly watched everyone’s expressions for signs that he was ok. Eventually, and to their complete surprise, they were given the opportunity to hold their new son. Sarah says in those few seconds they felt immense pride and a confidence that Max would be ok.
For the first few weeks, Max really did do ok and Sarah and Chris quickly learnt to adapt to the routine of life on the neonatal ward. Born at 26 weeks and one day of pregnancy and weighing only 1lb 15oz, Max was too small and fragile to be held at first but for 30 precious seconds twice a day, the new parents took it in turns to hold him through the incubator windows whilst his sheets were being changed. They celebrated each tiny bit of progress and laughed at how he would suck avidly at the cotton bud dipped in Sarah’s milk, which they used to keep his mouth clean and moist.
But at around the two week mark things began to change. Attempts to get Max off the ventilator were failing and he developed chronic lung disease. Instead of working to reduce his oxygen levels, his dependency started to creep up until they were at their absolute maximum. His condition was so unstable that Sarah didn’t want to leave his side for a moment but late that night, Chris convinced her to get half an hours sleep, as rest is so important when expressing. Before closing her eyes, something made Sarah check her phone and just at that moment a text came through from Chris. It said just one word – ‘RUN’.
Sarah says: “I’ve never moved as quickly as I did that night. It usually takes a while to get buzzed through the doors of the women’s unit, but someone must have seen how I was running because they opened straight away. When I got there, there was a team working on Max. Something had got stuck in his airway and he’d stopped breathing. They managed to revive him but it happened three more times, once when I was holding him and he just turned blue in my hands. Suddenly all the alarms were going off and the crash team rushed in. We we’re left standing in the corner of the room feeling a terror that’s hard to describe, I don’t think that memory of being on the brink of losing everything but being unable to change any of it will ever leave us. During those days we just survived. We lived in a constant state of anxiety, knowing that at any moment something could go dramatically wrong. ”
With Max’s condition continuing to deteriorate, a decision was made to start him on a course of steroids. It was the only option left open but given the very long and frightening list of potential side effects, including partial but permanent paralysis, it was a very frightening thing for Chris and Sarah to consent to. Max was paralysed and sedated and placed on an oscillator to keep his lungs permanently inflated while the medication took effect. Sarah and Chris were painfully aware that the longer he was dependent on the machinery to breathe for him, the worse his chances for a normal life were going to be.
Thankfully, the steroids did their job and very slowly, Max’s condition started to improve. Each day, the consultants would make the smallest adjustment, trying to work out the best course of action for Max. Sarah says: “Each baby and each situation is very different and there are so many components in the care of a neonatal baby. I have so much respect for the medical team who painstakingly and meticulously took the tiniest of calculated risks every day in order to work out what was best for Max. That takes real bravery and determination.”
Eventually, Max was well enough to come off the ventilator and be moved out of intensive care on to the high dependency unit (HDU) but, though the family were one step closer to home, some of their darkest days were yet to come.
Shortly after moving on to HDU Max was diagnosed with stage 3 retinopathy of prematurity (ROP), an eye condition that can cause blindness in premature babies. Sarah and Chris were told that to be in with a chance of saving Max’s sight, he would need laser eye surgery under anaesthetic. This would mean a return to the ventilator and the intensive care unit.
Sarah says: “The thought of going back to the place that was filled us with such difficult memories terrified us but the fear I felt at the prospect of Max being blind just grabbed hold of me and wouldn’t let go. Through the whole journey I’d comforted myself by daydreaming about all the tiny normal things we could do together in the future, like walking down the street jumping in puddles. Now even that seemed like it was being taken away.”
Still a full month away from his official due date, Max went in to surgery. He spent two days on the ventilator before returning to HDU and then came the wait to find out whether the surgery had been a success. During this time Max was also having difficulty learning to swallow and would often choke and stop breathing for periods of time.
Eventually despite his setbacks, Max was finally well enough to go home a week after his official due date and his parents received the news that his eye surgery had been a success, to Sarah and Chris’ immense relief. Max required home oxygen and some feeding support for a few months after graduating.
Sarah says she’d expected the mixture of fear and excitement she felt on the day they finally went home. What she hadn’t expected as much was the sadness at having to say goodbye to the neonatal team. She says: “We developed such a strong bond with so many special nurses & consultants who’d cared for Max that it was difficult to leave them behind. They’d got us through the hardest possible of times by showing care, compassion and even humour at times. We’ll never forget these nurses and all the staff, we wouldn’t be a family today without them.
Max is now a happy healthy nine month old who shows no outward signs of his difficult start in life. But like most parents of neonatal babies, Sarah and Chris still carry the emotional scars of their experience.
Sarah says: “It’s hard to explain the strength and mixture of emotions you feel as a NICU parent. You’re watching your baby suffer, desperate to hold and comfort him but also feeling that as a mother, it’s all your fault. Even expressing milk, the one thing you can do to help is also mentally challenging, what would be an intimate and bonding experience in a normal situation is the total opposite. You’re sitting alone in a room or next to their incubator with an expressing machine, rather than the baby you’re longing to hold.”
“I was lucky to have the incredible support of Chris and our family and friends, but I didn’t really feel like I could burden them with my true feelings at times because I didn’t want to take the focus off Max. That’s why I think having an emotional support service on the unit is so important. It’s somewhere close by you can go that’s separate, to help you process all the feelings and experiences, so you can ultimately concentrate on being a mum to your baby.”
To find out more about our appeal to support families like this visit our Tiny Lives Appeal page here.
