“The beeping monitors will haunt me forever” - Jacob’s story

Born extremely prematurely, Jacob faced a challenging battle for survival, requiring intensive respiratory support and multiple rounds of strong steroids. For Becky and Josh, their journey as first-time parents was a rollercoaster, filled with uncertainty and constant worry about whether their baby would make it through each day. Despite this, they cherished every moment they got to spend with him. Ronald McDonald House Tooting became their safe space while Jacob was fighting every day and, after 408 days, they got to bring their baby home for the first time, a moment they never thought would be possible.

Jacob was born in February 2024. He arrived prematurely at just 28 weeks, and was delivered via emergency C-section at St Helier Hospital, Surrey. When Jacob was 11 days old, his breathing deteriorated, prompting an urgent transfer to St George’s Hospital, London, via an emergency ambulance. Upon arrival, Jacob required ventilatory support and a high concentration of oxygen. His condition was critical, with dangerously high CO2 levels and collapsed lungs. For the following week, Jacob and the neonatal intensive care unit (NICU) consultants fought tirelessly to save his life.

The first couple of weeks were incredibly frightening and difficult for everyone involved. Jacob did not respond well to the standard types of respiratory support typically offered and on at least two occasions, we were told he might not make it. We had a private christening at his bedside, just the two of us parents and the grandparents (it’s hard to look back at the photos now), as we prayed desperately that the treatments they tried would make a difference.

One consultant, to whom we owe everything, decided to try Jacob on a breathing system called Neurally Adjusted Ventilatory Assist (NAVA), which gives babies more control over their breathing than traditional ventilation methods.

Over the following weeks, the NICU staff battled to manage Jacob’s oxygen levels, at times requiring up to 100%. I vividly remember the long hours spent by his bedside, praying that he would be okay. The sound of alarms signalling that he needed more oxygen will haunt me forever. The constant fear that there would be nothing more we could do for him was overwhelming. It felt like a cruel game – desperately trying to reduce his oxygen by just one percent, only for it to spike back up in an instant.

Skin-to-skin time was always difficult for me, as Jacob’s oxygen levels would shoot up whenever we tried to cuddle. I loved being able to hold him, but I was equally terrified. Josh and I spent countless hours by Jacob’s incubator, never wanting to leave him. We wanted to be with him every moment, not knowing how much time we had left. We read stories to him, held his tiny hand as he slept, and spoke to the other families around us. We shared in their joy as their little ones got better and moved on, but we also felt jealous, knowing that our journey would be longer and filled with more struggles than theirs.

Jumping ahead to 15 May 2024, a day that will be forever etched into my memory, we found Jacob looking incredibly sick and on 100% supplemental oxygen. On this day, Jacob’s lead consultant stood by his ventilator, closely monitoring the screen and making adjustments until there were no more changes to be made. We had difficult conversations about what would happen if Jacob’s oxygen saturations began to drop.

It was every parent’s worst nightmare, seeing the sadness in everyone’s eyes, knowing that they feared this might be Jacob’s last day or his final few days. The sympathy in people’s expressions was impossible to miss. At that point, we asked if we could stay on the ward and put in a referral for Ronald McDonald House Tooting. Until then, we hadn’t considered ourselves to be the ‘most in need’ of a room, since we were only 30-40 minutes away. But at that moment, all we wanted was to be able to run to Jacob in just a few minutes, should anything happen.

We had seen information about Ronald McDonald House Charities UK displayed in the parents’ room and we attended an information session hosted by a member of the House team. It was there that we learned about the Day Pass, which we used a couple of times before finally receiving a room. We spent five nights sleeping on the ward before a bedroom became available at the House.

We were amazed by how homely the House felt, such a stark contrast to the hospital. I loved the decorations that had been thoughtfully put up, as well as the information booklets and photos of other families who had stayed there over the years. It gave us a sense of comfort and connection, knowing we weren’t alone in our journey.

By some miracle, and thanks to the amazing dedication of the night nurses, Jacob made it through the night, and his oxygen requirements began to decrease. We will be forever grateful to the nurses in the room that night, as well as the day nurses who checked in on him at the end of their shifts and kept in touch with their colleagues overnight.

After seven months, Jacob moved to the Paediatric Intensive Care Unit (PICU) which was incredibly scary for us. It was a new environment, with new ways of working and a whole new team of professionals. He had a rough start in PICU, as he adjusted to his new ventilator, but with time, he began to thrive. In early January 2025, at 11 months old, Jacob’s oxygen flow was gradually weaned, and at this point we were finally able to take him out in his buggy for the first time, a moment I had always dreamed of. I’d watched many other mums have this experience and wondered if I would ever get to share it. I was incredibly nervous, but I was equally amazed and deeply grateful for that precious moment.

Just before his birthday, Jacob made his first trip to Ronald McDonald House Tooting, where House Manager Rachel greeted us with a warm smile and made sure we had a safe space with a blanket for Jacob to play on. It was the first time we truly felt like a ‘normal’ family, away from the constant presence of medical professionals. We are incredibly grateful to Rachel and the entire team at the House for making this possible. The team had even created a beautiful birthday balloon arch for Jacob, which was fantastic. We felt so special, and Jacob loved waving the personalised flag that had been made just for him.

We also loved all the different decorations celebrating special occasions like Christmas and Halloween and opening our Christmas hamper, filled with generously donated presents, was such a thoughtful touch. Connecting with other families in the kitchen area became a special part of our day, where we could share our experiences and offer or receive support when needed. Grabbing a quick, free coffee on the way into the hospital also gave us that little extra boost to start each day.

On 9 February 2025, Jacob celebrated his first birthday surrounded by family and the nurses who had cared for him, many of whom made him a card and brought presents for him to open. Jacob even visited the NICU ward, where the nurses made him, and us feel incredibly special. Despite everything Jacob has had to overcome with his breathing, he remains a joyful, giggly little boy who continues to amaze everyone with his resilience. He’s working hard on his head control and sitting up with support. He’s developed his own ways of communicating and has mummy completely wrapped around his little finger. Jacob has a big personality and isn’t shy about letting us know what he wants and what he doesn’t!

As you can imagine from our journey, we had many concerns over the course of the 13 months. One of the biggest worries was leaving Jacob each evening and not being close enough if he needed us. Ronald McDonald House played a huge role in alleviating that concern and being less than five minutes away made a world of difference, easing our anxieties about leaving him. It also meant we could get more rest and sleep, as we no longer had to spend time traveling back and forth from home.

If we hadn’t been able to get a room at the House, we would have initially had to self-fund hotel stays, which would have been a significant financial burden. After that, we would have had to return to traveling from home to the hospital, which would have taken a toll on my already fragile mental health. The constant anxiety of being far away and the reduced amount of sleep would have made it even harder to cope during such a challenging time.

Being so close to Jacob made a huge difference in his recovery as it allowed us to spend more time with him, making him smile and entertaining him, giving him even more reasons to keep fighting. We also became experts in his care. In PICU, we gained the confidence to adjust his breathing support when necessary and learned how to maximise its effectiveness, ensuring that he received the best care possible.

Staying at Ronald McDonald House Tooting had a positive impact on our family by allowing us to get extra rest during the day and at night, so we were more refreshed when seeing Jacob and being close to him reduced our anxiety. We are grateful for the support we received from other families going through similar journeys and for the welcoming nature of the staff who made us feel cared for throughout our stay.

On 24 March 2025, after 13-and-a-half months in hospital, we were discharged home. Jacob came home with a high level of needs and supervision but currently we have support overnight. Whilst coming home was long awaited and longed for, it was also daunting. No nurses over by the computer or doctors on standby. We were now the ‘nurses’ and responsible for making quick decisions and making sure all Jacob’s care needs are met. It took a couple of weeks to settle in at home, but we slowly got into a routine and Jacob started to thrive. He loves to be taken out in the pram, playing with his toys, and spending time with his grandparents. He has seen fish at the garden centre for the first time and recently attended his first (very small) play session for children with complex needs.

It’s now November 2025 and Jacob is off oxygen completely during the day, with use of his BIPAP ventilator reserved for overnight. He has come off half of the medications he returned home with. We continue to work with St George’s Long Term Ventilation Team with regards to lowering his BIPAP pressures overnight. Day to day, Jacob is fully engaged in activities and has loved exploring a range of farms and play spaces over the summer months.