130 days in hospital care: Alexis and Gareth’s story

Alexis Gareth Zara and Jasper

In October 2019, at 23 weeks and five days, Alexis went to her local hospital because she was experiencing pains. As a small island, Guernsey’s neonatal unit is only able to provide emergency, short term care to very premature babies, so, she was flown to Southampton the next morning, by medevac (urgent medical air transfers).

I was 23 weeks pregnant and had come into Guernsey's maternity ward for a check-up the day before as I felt something was not right. I'd been sent home reassured then but, on the Saturday, spent the day in considerable pain and went back up to the hospital that evening. After a scan, I was told that due to the risk of early delivery, I would be medevacked to Southampton where they hoped they would be able to stabilise the pregnancy and get my baby closer to term.

Perhaps I was naïve, optimistic or the medical staff did a good job about keeping it all feeling routine, but I really thought it would be a case of waiting out the boredom on bedrest until I hit 30 weeks and be transferred back to Guernsey to wait out as much of the pregnancy as possible. With me on a stretcher and an incubator onboard in case we delivered mid-flight, there wasn’t room for Gareth alongside the medical team so he followed later that day.

With what we thought would be a long bedrest in Southampton, my main concern was initially how I would be able to continue to make life as normal as possible for our then five-year-old son, Jasper, who would need to spend most of that period in Guernsey with his father so that he could continue to go to school, and worrying about how we would afford the plane tickets for him to come and visit me at the weekends.

The initial chaos of the transfer to Southampton had died down and Gareth flew back to Guernsey to be with Jasper. I got a subscription to an online postcard service so I could take pictures and get them sent as postcards so he had something arriving every day from me.

However, the long wait wasn’t to be and after just two more days in hospital, my waters broke and it became clear that despite my best efforts, the baby was coming.

The hours before delivery were extremely tough. The conversations with doctors and counsellors were all around survivability, developmental outcomes and the realisation that if Zara survived her birth - the ordeal she (and we) was about to go through - then Southampton was going to become our second home for some time.

We’d later find out the reason for my PPROM was that I had an infection of my uterus. This wasn’t discovered until the c-section, but I had suddenly developed a real, profound seizing fear which was a sign my infection was now sepsis.

I am so grateful that I and the medical staff listened to my instincts that something was terribly wrong. They moved fast and as we went into the operating theatre, the panic I had felt from the septicaemia ebbed away and I felt much calmer, I was in good hands. The anaesthetist explained they wanted me to take 10 deep breaths before I was put to sleep. They wanted the baby to get as much oxygen as possible before the anaesthetic reached them and the team would work quickly. I remember taking the biggest lung-bursting deep breaths of my life, conscious that it was the last thing I was going to be able to do for my baby before they had to take over the fight, all on their own.

Zara was born by general anaesthetic c-section at 24 weeks and three days; around four months premature. Including medical equipment, she weighed 590g and measured 30cm long. She was resuscitated in theatre and placed in a plastic sandwich bag to protect her near-translucent skin from the outside world. As she was wheeled in an incubator to the NICU, Gareth got to meet her in a corridor, found out we had a little girl and he named her there.

Zara was intubated and had wires and monitors attached everywhere, her eyelids were still fused shut, her little limbs just seemed so fragile and skinny. We always thought incubators looked small but compared to Zara, her incubator was cavernous. Five hours later, she was stabilised enough that we could both go to the NICU to see her.

Zara 1

Our first conversation with her NICU paediatrician was comprehensive and compassionate, we were told she was a feisty girl and had already put up a good fight, but it just seemed like the list of the challenges that Zara might be expected to face was endless. The only certainties we had that day were, if she was to survive, we would be here until at least her due date and that she would be going home on oxygen.

At this point, neither Gareth nor I knew all that much about the Priaulx Premature Baby Foundation. We had heard that they had some compassionate housing in Southampton but that was the extent of what we knew. Since arriving in Southampton, Gareth had been moving between any hotels and guesthouses we could find space in.

One of our relatives told us to call the Foundation which Gareth did and having explained our situation, they said that we could move into Aggie's Burrow, one of two flats (at the time) right next to the Princess Anne hospital, the next day. With the situation worsening, it was comforting to know that we had accommodation lined up for what was to come, so we could focus on our baby.

After a few days, Zara developed an infection, her oxygen demands went up to 100% and she still wasn’t getting adequate oxygen. We lived hour to hour. My mother brought Jasper over so he could meet his sister. That coincided with her “one-week birthday”. She was so desperately sick then, it didn’t look like she was going to pull through and it was just so important to us that her brother would have a chance to celebrate his little sister so I decided we would have a “one-week birthday party”: a supermarket cake, pizza takeaway and we all sat round a table in Aggie's Burrow and sang her happy birthday and then had a dance-off! It felt so surreal to be having these moments of joy when Zara was fighting for her life just next door, but I knew it was the right thing to do for our son and having the flat allowed us to make these precious memories.

Although it would be three weeks before I could hold her, I spent every waking moment with Zara, talking and singing to her, gently touching her through the little doors of her incubator, changing her impossibly tiny nappy and when she was well enough, feeding her expressed milk through a tube, one millilitre at a time. The NICU nurses were wonderful at giving us the confidence to take part in Zara's care which really helped to make us feel like her parents. It was a proud day when we “passed” our tube feeding course and were signed off to take over her feeds!

Gareth was back in Guernsey with Jasper during the week (it was important to us that Jasper be able to retain a sense of normality, go to school, etc.) but flew over every weekend to visit.

Aggie’s Burrow provided somewhere for us to be a family, for Jasper to come and visit on weekends. We spent Christmas there, and Jasper was relieved to discover that Father Christmas managed to find us in our temporary home. Family visited and we were able to have brief glimpses of peace and normality amongst the chaos.

Zara 2

Having a sick baby and a young child that needed me a plane journey away, without knowing when we would be reunited, was terribly hard and with no way of knowing when it would be over, it took its toll. For reasons like this, it cannot be overstated what a difference compassionate housing made.

When he visited, I had somewhere for Jasper to come to call ‘other-home’, see his sister and read to her, for me to give him a bath, read him a book and tuck him in at night and just be his normal self in very abnormal circumstances. We didn’t have to worry about paying for taxis, catching buses or all of the other expenses that can come with a long hospital stay away from home.

When it got really bad, we were so close to her side. One morning, whilst Zara was really ill with her first infection, I got a call at 4.40 am in the morning to come into the hospital. She’d been getting sicker over the last few days and apparently, she'd had a big desaturation and they were having trouble getting her back.

The phone rang and I knew it was bad. I think I’d been expecting this moment for days and asked, “Is she dying?”. The person on the phone paused and so gently said, “We don’t know. You need to get here as quickly as you can, but please drive carefully”. I remember saying, “I’m right next door” and I was by Zara’s bedside in three minutes.

I was by her incubator the whole time. I genuinely don’t know what happened over the next few hours but the hospital team got Zara back on her feet. Over the next seven weeks, she was very unwell with emergency re-intubations on several occasions. We all kept going but it was terrifying; but there was such comfort in the fact that, if she needed me in the middle of the night, I would be there within minutes, just steps away.

Those awful days feel so far away now. Zara is an amazing little girl. In her 130 days in hospital that tiny little girl faced so much: collapsed lungs, sepsis, line infections, retinopathy and much more I suspect we have forgotten in the chaos. She was well enough to be air-transferred back to the Guernsey Neonatal Unit at 100 days old for another month in hospital before we finally bought her home. She came home on an oxygen tank but came off that a few months before her first birthday.

When we realised we were going to have a very premature baby, we chose Arielle as a middle name as it means lion, and we knew this baby would need to be fierce to get through everything that was coming her way. Our little lioness has never stopped being the feisty little firecracker that the paediatrician noted her to be that first day of life. Now aged 3 and in defiance of the odds given to her, meeting all her milestones, she's walking, talking, running, jumping and being every bit the ‘threenager’ we would want her to be.

Her outcomes are due to the phenomenal medical care that we were given, and Zara just kept on fighting even when we were telling her it was ok to let go. Throughout the ordeal, the wonderful doctors and nurses at the NICU would say to me more than anything else that my being there, constantly by her side, had been vital to her pulling through.

Without access to Aggie's Burrow, being with Zara as much as I was over the 99 days would have been much harder. For that, we are so grateful to the PPBF for providing us with our home away from home and keeping us close to our daughter.

Zara today

Find out more about the Priaulx Premature Baby Foundation here