“We wouldn’t have coped without it”: Tobias’ story

Tobias was born on 28 January 2022, three weeks before his due date. Arriving by planned caesarean section, due to being a footling breech, his parents Liz and Ste had no idea, during the first few hours of Tobias’ life, that he had a serious heart condition. Little Tobias would go on to have several life-saving surgeries and procedures to treat his condition. Throughout all his treatments, Tobias’ family, including big sister Eli-Vieve, would be accommodated nearby at Ronald McDonald House Alder Hey.

Tobias was born at Ormskirk District General Hospital, near our home in Kirkby, Merseyside. He arrived safely, weighing 7lbs 13oz, and looked perfect, but after a few hours, I noticed he was sleeping a lot and wasn’t feeding particularly well. The midwives didn’t seem too concerned, advising me that he was just a ‘sleepy newborn’.

The following day, the nurses were doing their checks at around teatime and by this point, Tobias seemed very distressed and off-colour. One of the medical staff noticed that he had a heart murmur – an extra noise heard when the heart is listened to with a stethoscope – and his oxygen sats were dangerously low. Within moments, he was rushed off to resus, as he’d gone into heart failure.

He was then taken to the Neonatal Intensive Care Unit (NICU), where he was ventilated and put on medication to help keep his heart valve open. At 11pm that evening, he was rushed to Alder Hey Children’s Hospital, to receive more specialist neonatal care. My husband Ste and I got in our car and followed the ambulance to Alder Hey. It was horrific; I was still in a lot of pain from my C-section, and we were so worried about Tobias. Once he was stabilised, Ste took me home but just a few hours later, he came to pick me up again and took me back to the hospital, as things were touch and go with Tobias.

Tobias had been diagnosed with hypoplastic left heart syndrome (HLHS), a congenital condition where the left lower pumping chamber (left ventricle) of the heart does not develop properly, so is much smaller than usual. He was critically ill and if left untreated, he wouldn’t survive.

We weren’t giving up on our little boy, so we consented to an operation to install a stent to open a valve in his heart. That surgery took place on 15 February 2022, when Tobias was just 17 days old.

During his time in the NICU and afterwards when he was transferred to the ward, we were lucky enough to be given a room at Ronald McDonald House Alder Hey. It was incredible. When we first walked into the House, it was like someone had reached out and put their arms around us. The House would become our lifeline. Our daughter Eli-Vieve was just four at the time, and in reception class at school. We had no idea how we were going to cope with looking after her while still being there for Tobias, until we were offered a room at the Ronald McDonald House.

The staff at the House were so warm and welcoming and the whole atmosphere was calming. Having somewhere where we could all stay together as a family, was so important. Eli-Vieve was our ray of sunshine through dark times; I can’t imagine what it would’ve been like if we’d had to stay apart from one another. We would have breakfast all together and Eli-Vieve would do her homework and play in the House. Ste’s older daughter Leah came to visit us at the House too, which was lovely. There was even a breast pump I could use to express milk, so I could continue to feed Tobias. And we were always just a short walk away from him, which was vital.

I don’t know what we would have done without the House. Although we don’t live too far away from Alder Hey, the fact we didn’t have to tackle the motorway every day, was amazing. Staying in a hotel would’ve been financially impossible too. We’ve stayed a total of five times at the House since Tobias was born, as he has been back and forth for more surgeries and procedures several times. We’ve also been back for family events and always pop in to say ‘hello’ to the staff when we’re at the hospital for appointments. They’re such kind, empathetic people, to whom we are so grateful.

Tobias’ journey is far from over, so we are likely to stay at the Alder Hey House again in the future, and it is so reassuring knowing it is there. It’s clear the 30-year-old building needs updating, so I was really pleased to hear about the multi-million-pound refurbishment of the House. Some of the décor is very outdated and the beds and chairs are uncomfortable, so it will be wonderful to see those improvements made. Having said that, my lasting impressions of the House are not of the bricks and mortar but of the lovely, friendly and cosy environment the staff have created. We always felt so safe and cared for when we were there, especially during some of the hardest times of our lives.

On one occasion during Christmas 2022, we nearly lost Tobias, after he became very ill following a routine childhood illness. I will never forget the kindness of the House team during that particularly difficult period. We were also able to continue making precious memories with Eli-Vieve to help retain some sense of normality, putting up a Christmas tree in our room and getting involved in festive activities the House so thoughtfully organised.

We feel incredibly lucky to have benefitted from a stay a Ronald McDonald House Alder Hey several times and would urge anyone who can, to support the MacHouse Appeal to help more families like ours in the future. You never know when you might need the Charity’s support, and we’re so grateful they’ve been there for us, when we’ve needed it.