tiny but mighty: my premature birth story

So I’ve written a blog. I’ve never done anything like this before because I’m conscious of oversharing. That being said, mothercare’s nominated charity is Bliss and they represent a cause close to my heart. Here’s why.

nothing prepares you for having a premature baby

About 10 years ago, we had a baby born at 26 weeks. I was age 35 and already had a daughter, Ella, who was seven. We both worked full-time and had the usual busy lifestyles, juggling work with getting Ella to swimming lessons and being late to pick her up from school clubs because of getting stuck on the trains.

It was my second pregnancy and it hadn’t been such a breeze as the first one, but I had put it down to being seven years older. I was otherwise fit and well, but at my 16-week antenatal appointment my blood pressure reading was high. This pattern continues so I was prescribed medication and accepted I had to take it a bit easier. I was working full time but knew I felt different. At 24 weeks, I had another antennal appointment. My BP was still high and the urine test showed increased levels of protein, a sign of poor kidney function. They told me there was a risk of pre-eclampsia so they wanted to admit me there and then. But I agreed to rest, stop work and to go back to the day unit every day that week to be checked. On the second daily visit, they kept me in. I cried.

I was wired up to a BP machine which inflated every 20 minutes and took a reading. It was consistently high. They kept coming to check on me. “Any blurred vision or headaches?” they’d ask. “No, I feel fine” I’d say, “I just want to go home.” I was visited by the doctor and nurses who ran the Special Care Baby Unit. They showed me around the unit and talked about what to expect if they delivered the baby early. As I understood it, I was 25 weeks and every extra day I could keep the baby in was another day for the baby to develop. The strangest thing to grasp was that the hospital’s primary care was for me, the patient, and not the baby until they arrived. Something as a mother I found quite hard to deal with. But I did as I was told and waited. They gave me a steroid injection to help mature the baby’s lungs and they scanned me to size the baby. It was 1lb 10oz.

the day that changed everything

Ultrasound scan of Susan's preamture baby

With me in hospital for five days with no change, just being monitored, my husband went back to work. He dropped Ella at school and we had arrangements for someone to collect her so he could do a full day. But not everything went to plan. One day my vision was blurred. I panicked. I called him and he said to ring the buzzer, which I did. Within minutes I was rushed down to the labour ward with a full crash team. I was answering questions while being set up with intravenous tubes. The medication made me feel as if I was burning from the inside, I thought I was going to die. He arrived. I don’t know how he got there so quickly.

After some chaos and panic, I was transferred by ambulance to another hospital - the severity of the pre-eclampsia meant that they had to be quick. Barnet hospital was 15 minutes away and was a higher-level baby ICU. After being anaesthetised, I was in theatre and the baby was born by caesarian at 5.05pm.

It should have been magical, euphoric and emotional but after they said he was a boy they whisked him away and I lost consciousness. My husband doesn’t talk about it much but this part was definitely worse for him. He had no idea of the outcome.

When I came around, he was there. I couldn’t move and I could barely talk. He said he could go and see the baby and take a photo for me if I wanted him to. He came back to show me the images; it wasn’t what I was expecting. It wasn’t cute or cuddly and I had no warm feelings inside.

I was delirious that night and hallucinated from the strong pain relief so nothing made sense. When they assessed me the next day though, I was moved from ICU to the main ward. I still couldn’t move much (all the tubes didn’t help) so the nurse suggested they wheel me round to the baby unit in the bed. I was overwhelmed and given morphine to help me rest.

the worst day ever

The following few days are a blur. I would be wheeled to see the baby in my wheelchair. Aware that the emotional upset was a risk for my high BP, they encouraged me to rest in bed as much as possible. On the fifth day after we had him, I was called urgently to the unit. The consultant wanted to see us both. The worst phone call I have ever had to make was to ask my husband to leave Ella at 6am on a Saturday morning because they had some bad news – our baby might not make it. The consultant explained that while they were doing everything they could, his lungs were really poor as they weren’t fully developed, and it could be a matter of hours. We should be there. All we could do was hope.

Premature baby Joseph in the NICU ward

I struggle to put into words how I felt. Useless. Empty. Heartbroken. Sick. I spent the next few hours sobbing. There was nothing I could do. I am usually ever the optimist - ‘it’ll be fine’ is my most spoken phrase - but this time there seemed no bit of hope to cling onto. Thinking back to those few hours that followed, I mentally tortured myself with the reality of what might be. I think it was to protect myself from the overwhelming emotional upset that I couldn’t cope with. To get used to the idea a bit quicker.

We were encouraged to decide on a name. I just remember not wanting to because it would become too personal. He would be real. All the same, we called him Joseph.

As useless as we felt, we drew hope from all we knew and arranged for Joseph to be blessed in the hospital. It was out of our hands. We went back to the unit every couple of hours, each time not knowing if it would be the last time we would see him. It got to 7am on Sunday morning. It had been 24 hours. He was still fighting and we realised we had to start believing in him. The next 24 hours were crucial. He made it through those too.

starting a diary

The best thing I ever did during this nightmare was starting a diary. It wasn’t a conscious decision at the time, there was just so much to take in. So many names of nurses, medication and times of blood transfusions etc. It wasn’t anything fancy, just things like ‘Stable day, he looks comfortable. Pressure is lowered again. Ella visited in the evening with Mum. Lung drain blocked. Will leave in place until tomorrow.’

After 10 days of being in hospital, I was discharged home and the adjustment began. We would begin the routine of calling the unit in the morning to see what sort of night he’d had, get Ella to school and I’d get up to the hospital for around 10am. I’d either stay there all day and mum would bring Ella up after school or wait for my husband to arrive after work. We’d then have to find some time to eat and get her to bed. Thank goodness we’d never had a strict bedtime routine. It meant that she was used to eating when we did and she came everywhere with us, however late.

We all hated leaving him. It was the hardest thing we did but, by way of preserving my sanity, I told myself three things. One, he was being well looked after. Two, there was nothing I could do better for him than these machines were doing. And three, he wouldn’t remember any of this. Once home, I’d call the unit before we went to bed to see how he was. For four and half months I dreaded the phone ringing in the night. I kept a bag packed ready to run out the door in case we got a call. But the phone didn’t ring.

no change became a good thing

Joseph stayed in the ICU for around four weeks. After 10 days, he had the monstrous tube removed from his throat and was put onto continuous positive airway pressure (CPAP) but the machines were still overwhelming. He had a line in each hand and one foot and a main line in his leg to administer medication. The day after that I held him for the first time, 11 days old. It was hard with all the wires but they encouraged me to hold him so he so he could pick up my scent. A few days later his eyes opened for the first time too.

Susan holding her premature baby for the first time

The emotional support was incredible, for all of us. They made sure I was resting. Encouraged me to spend time at home with our family and Ella. Urged me to come in a bit later and do some shopping on the way to the hospital. Never ever made us feel as if we needed to be there more. One of the biggest supports they provided was bonding with the baby, starting with showing me how I could touch him in the incubator. They encouraged me to express breast milk which wasn’t something I’d ever done before. I was always quite practical and had bottle fed Ella but it gave me a purpose which I hadn’t really had until then. It became a routine and I could plan my day and visits around it. And they always told me he was doing so well because of it. It was how I kept the diary going for so long. It gave me time to myself.

slow progress

After Joseph was moved from intensive care to the high dependency unit, the improvements were more gradual. Although we had got into the routine of it all, it almost became almost harder. I considered it a mental endurance test. Staying positive because nothing worse had happened was draining. Christmas came and went when Joseph was seven weeks. Although Ella was only seven, we didn’t hide the fact that it would be different. There would be other Christmases.

When Joseph was moved to the low dependency unit at another hospital, the progress really slowed down again. I was getting so worn out. We were into our fourth month of this and January really dragged with what seemed like no good news. I had run out of positive ideas and plans, and felt like I had nothing to look forward to. Life was standing still. One night we were asked to arrange to stay in a room with Joseph so that we could show our capability for dealing with him potentially coming home with oxygen. It was awful. The machines kept beeping and alarms were ringing. We clearly weren’t ready and nor was he. He would have to stay a while longer. They were long, lonely days and I felt as if I wasn’t doing anything right. It was so indefinite.

home at last

A few weeks later we took Joseph home. He was ready this time. Being on oxygen meant we had to carry a tank around with us, but he looked ready. He weighed a whopping 5lb 5oz. It’s a day that we had literally dreamed of.

Ella feeding her premature baby brother

The months that followed were much calmer compared to the rushing around we’d been doing, and we were thankful of staying at home a lot. He improved so quickly and all the what-ifs were accomplished successfully one by one. The hearing test, the eye tests, the cognitive tests. Such great achievements for all babies but we were so grateful for each positive outcome.

On his first birthday, we threw a party to celebrate. We had promised ourselves the day would come. It was also a chance for us to commemorate his baptism that took place in hospital when he was just 10 days old. It helped the four of us to get everyone under one roof to tell them that we couldn’t have done it without them. The friends who had taken Ella to school, the aunties who’d cooked us dinner, our parents who had put up with us, our sisters who had bought our food shopping, the friends that had supported us without question and the friends we had met in the hospital along the journey. The one lesson I had learnt was to accept the help and I was eternally grateful.

ten years on

As he got bigger and older, Joseph showed no signs of any long-term effects from the prematurity with the exception of asthma. For the first two winters we were in and out of hospital with breathing problems but we got to know the signs. Each time we got it right and learned to trust our instincts. I would never apologise for caring too much after what we had been through.

At around 14 months, Joseph was bottom shuffling. He bypassed crawling completely and used to scoot around the house on his bottom. By 19 months he was walking and then went straight into kicking a ball and running around. The progress was incredible.

He’s 10 years old now. He is fit and strong, mainly due to his obsession with football ever since that day he kicked the ball. His first word was ball. He is a strong swimmer, runner and footballer. He has a huge appetite for food. He is caring and kind and enjoys school. He loves his football teammates at Cheshunt and is a huge Tottenham fan. He loves his friends, grandparents, aunties, uncles and cousins and most of all he loves his big sister. He loves life.

Ten-year-old Joseph and his sister

the bond

Writing this, I don’t know where to end. The experience changed me. My love and respect for my husband. My love and gratitude for our family and friends that supported us. My love and pride for my daughter who is growing into a strong woman. My strength and belief in myself as a mother and my love and affection for my son.

He is the most affectionate child. He laughs at my jokes, he asks me if I’m alright if I’m quiet, he winks at me during his school concert, he gives me a thumbs up and a smile from the other side of the football pitch. He tells me he loves me more.

The bond is unbreakable.

Joseph and his family


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