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"The House was a godsend": James's story

February 15, 2024

Victoria and Matthew were delighted to be expecting their first baby, a little boy they’d name James, after several years of trying to fall pregnant. When they discovered during a routine scan that their unborn baby had a serious heart condition, their world was turned upside down, and they were given the option to terminate the pregnancy. Remaining hopeful that James would be OK, the parents-to-be continued with their much longed for pregnancy and their son was born on 21 January 2019 weighing 6lb 11oz.

Soon after he was born, doctors confirmed James’s heart conditions, which would need urgent treatment at Alder Hey Children’s Hospital in Liverpool, a 50-minute drive away from the family’s home in Bolton.  

Guest Blogger: Victoria

It was during our 20-week scan at Royal Bolton Hospital that we were told there was something wrong with James’s heart. It was my first pregnancy after more than three years of trying to conceive, so my husband Matthew and I were desperate for everything to be OK. A couple of days later, we saw a specialist at Bolton, who confirmed there was a heart problem and we then got sent to Saint Mary’s Hospital in Manchester, where we saw Dr Gladman from the Fetal Cardiology department.

A week later, we went back, and although the exact diagnosis was still unclear, we were told that there was a ventricular septal defect (VSD), which is a hole between the lower pumping chambers (ventricles) in the heart. They’d also detected something wrong with his aortic arch. We were given several options. We could either terminate the pregnancy, go for further tests which increased the risk of miscarriage, or continue with the pregnancy and hope for the best. We chose the latter option.

As my due date approached, we were told that our newborn baby would need surgery and that would be done at Alder Hey Children’s Hospital in Liverpool. It was a daunting prospect, but we were so excited about having our first baby and we focused on the joy of becoming parents.

I went into labour naturally and everything was going fine until I was about to go into the birthing suite and the midwife could no longer detect James’s heartbeat. The emergency buzzer was pressed, and I was taken into theatre for an emergency caesarean section.

When I woke up from surgery, James was in the neonatal intensive care unit (NICU), and I was back on the ward with my mum. That’s when I was told James had an interrupted aortic arch, which is when the large blood vessel that takes blood away from the heart to the rest of the body (aorta) is not fully developed, and the VSD was also confirmed. What we weren’t expecting, was that James also had bilateral microtia, meaning he’d been born with one ear completely closed and the other not fully formed. It was difficult to take in all the information, but the hardest thing was being on a ward surrounded by mums and their newborn babies before I’d even had the chance to meet James. It felt so cruel.

It would be another 24 hours until I finally got to see him. It was wonderful when that moment finally arrived but also so scary. He was being tube-fed and was connected to all kind of machines. On day four after James was born, an ambulance finally became available to transfer James and me to Alder Hey. He was blue-lighted to Liverpool, and Matthew and I followed in the car.

That night, when I was holding James on my own for the first time, he aspirated and started choking and went blue. It was terrifying. The doctors and nurses rushed in to stabilise him. Thankfully, Matthew had already been given a room at the nearby Ronald McDonald House Alder Hey and when I called him, he rushed over and was with me within minutes.

Once things had settled down, in the early hours of the morning, Matt and I went back to the Ronald McDonald House. I was still in a wheelchair, recovering from the C-section. It was so good to be able to settle into our new ‘home away from home’, get a shower and something to eat, ready for another long day on the ward the following day.

The House turned out to be an absolute godsend for us. From the moment we checked in, the staff couldn’t do enough for us. They made us a cup of tea and provided us with essentials we’d forgotten to bring with us, such as toothbrushes and toiletries. We stayed in the ‘Cinderella’ room for 11 weeks.

During that time, James was very poorly. He was supposed to have his surgery at a week old, but he caught strep, so they had to delay it. While he was unwell, they sent off samples for genetic testing.  A couple of weeks later, the results came back revealing that James had DiGeorge syndrome (22q11 deletion), a condition present from birth that can cause a range of lifelong problems, including heart defects and learning difficulties.

At three weeks old, James had nine-hour open heart surgery to rebuild his aortic arch. While he was in theatre, Matthew and I spent most of the day in the Ronald McDonald House. We washed and changed our bedding, and tried to retain a bit of normality even though we were desperately worried about James.

Thankfully, the operation went well. He spent a week in the intensive care unit (ICU), where parents weren’t allowed to stay, so I slept in the Ronald McDonald House for a few nights, until James was well enough to go back to the ward. During that week, I had the first hot meals I’d eaten in a long time. The landline phone we had in our room connected directly to the ICU, so I had that peace of mind that we could be contacted at any time of the night or day. It was also amazing to have access to a breast pump in the House, as I was keen to continue expressing milk for James for as long as I could.

James’s recovery from surgery wasn’t straight forward. One night I woke up next to James on his bed, just as a nurse was hitting the emergency buzzer. She shouted down the corridor to alert her colleagues that he wasn’t breathing. A doctor ran in to help and I was ushered out of the room while they worked on him. I called Matt and he was there in three minutes. We thanked our lucky stars that the nurse had found James moments after he’d severely aspirated, and they were able to save him in time.

This incident led to a diagnosis of dysphagia, meaning James had an unsafe swallow. He had to have a feeding pump and then a percutaneous endoscopic gastrostomy (PEG) tube so he could be fed through his stomach.

When James was 11 weeks old, Matt had to go back to work, and we moved into one of the Ronald McDonald House apartments. Around this time, James got diagnosed with craniosynostosis, a rare condition where a baby’s skull doesn’t grow properly, and their head becomes an unusual shape. He was also struggling with his calcium and iron levels and needed daily blood tests to monitor him. He was well enough, however, for me to take him off the ward to the Ronald McDonald House for short periods. The first time I took him was terrifying, but it was amazing to have him with me in the apartment. I put the telly on and had a cup of tea with him next to me and everything felt ‘normal’.

The rollercoaster ride continued, however, when, at 13 weeks old, James was taken for a routine scan at around 6pm one evening. Two hours later, he was rushed into theatre for emergency bowel surgery; he had a twisted bowel and had to have his appendix removed too. Matt was in work when I rang him to say he was going for surgery, but he rushed over from Bolton and was able to stay in the Ronald McDonald House that night and be with us.

We had really bad weeks when I struggled mentally and physically, and having the House meant my mum could stay and help when Matt couldn’t be there because of work. I could go and have a bath, take a few hours away from the ward, knowing I was only a few minutes away if James needed me.

James was 19 weeks old when he was finally discharged. It was wonderful to bring him home for the first time, but he was still quite poorly, so we were back and forth between Bolton and Alder Hey several times, almost weekly for the first few months and then regularly for appointments. We still go there four to five times a month for James’s medical appointments.

In 2021, James had surgery to treat the craniosynostosis and we were grateful to be given a room at the Alder Hey House again. We’d had another new addition to the family by then; Louis was born in 2020 and stayed with my grandparents while Matt and I stayed close to James in the House.

James should have been in hospital for a week or so recovering from the operation but ended up being admitted for a month. The surgery went according to plan, but he had respiratory problems when he was sleeping, which prolonged his stay in hospital.

Having the Ronald McDonald House then, was a real blessing. James was feeling well, despite the breathing issues, so during the day we’d take him to the House on a Medical Pass, and he’d be able to play and enjoy a change of scenery. If it was a nice day, we’d play outside in the garden.

Our most recent stay at the House was in 2023 and we were there for a week. James was given a ventilator to use at night and he had to stay on the ward to be monitored while he was asleep. Again, he wasn’t poorly, so during the day he’d come and be with us at the House. It was summer, so we spent a lot of time playing outside. He also discovered the Paw Patrol toys in the playroom, which he loved, and kept going back to play with day after day!

James is now five and is amazing. He is deaf and non-verbal but he’s learning British Sign Language (BSL), as are we, and he is doing so well. He’s at a school for deaf children and is thriving. He’s the loveliest little boy and caring big brother to Louis, and Lyra, who was born in 2022.

Before our own experience of being supported by Ronald McDonald House Charities UK, I’d never heard of the Charity, other than seeing the collection boxes in McDonald’s restaurants. Now I urge everyone I know to support them and cannot speak highly enough of the Charity and the help we received. The staff always asked how I was and how James was doing. When I was staying there on my own, that meant so much to me. I was desperate to talk about my baby and the House team just seemed to understand what I was going through. Not to mention the abundance of doughnuts and pastries that always seemed to be on offer, thanks to the kind donations the House receives! I’ll be forever grateful for everything they did for us.

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