"Our miracle baby": Rowan's story

***Trigger warning: infant loss***

Rowan and Dexter were born prematurely at just 23 weeks gestation, both requiring emergency surgery on their intestines at St. George’s Hospital just weeks after being born. Ronald McDonald House Tooting was a ‘home away from home’ for parents, Anna and David for 162 nights while they were going through the hardest time of their lives.

Guest blogger: David

My wife and I were expecting twin boys, due at the end of May 2024, but they decided to enter the world four months early, in early February. As they were both so premature (born at 23 weeks and one day), Rowan and Dexter were initially looked after in a Level 3 Neonatal Intensive Care Unit (NICU) in St Peter’s Hospital in Chertsey, where they required full ventilation. After a short two-week stay in Chertsey, the boys developed worrying intestinal complications, with doctors suspecting both were suffering from necrotising enterocolitis (NEC).

Both boys were transferred to St George’s Hospital in Tooting, four days apart, to have the same emergency surgery on their intestines. Despite being given very low odds of survival due to their critically low birth weights, Rowan weighing around 500g and Dexter about 450g, both surgeries were deemed a success, thanks to the skill and expertise of the surgical team.

After the surgery, it was up to the boys to slowly recover and grow, with the incredible support of the NICU team in St George’s. Sadly, our youngest, Dexter never truly recovered from the surgery and passed away after three weeks of being with us. While this was the most difficult time of our lives, we are deeply grateful to the NICU team for giving him his best chance and for the emotional support they offered us, and to Ronald McDonald House for giving us the ability to be by his side at the right time to say goodbye.

Rowan, on the other hand, continued to battle on. Our six-month stay in London was an emotional rollercoaster, with our son overcoming every challenge that came his way. After beating the odds to survive the surgery, it took him three months to get off his breathing support. He developed sepsis on three separate occasions, one of which required emergency intervention. There were also concerns about his brain, including suspected meningitis and brain bleeds. His eyesight was at risk too, with level 2 retinopathy of prematurity (ROP) affecting both eyes. In the later stages, Rowan also struggled to drink milk and showed little desire to eat. He also had to recover from surgery a second time to close the stoma he had from the first.

Aside from our children’s health, one of our biggest concerns when transferring to St George’s was where we would stay to remain close to the boys. Tooting is quite a distance away from our home in Kent and the twins’ conditions were so unstable, that we could have been needed at their side within minutes. It was crucial that we found somewhere nearby to stay, so we could be there whenever they needed us.

Leaving our children in the hands of others was incredibly difficult for my wife and me. When you’re pregnant, you expect to be there with your children every step of the way, from the moment they’re born. The thought of being over an hour away from them was a constant worry, not just in case something happened, but also in terms of the practical challenges, like balancing work and being present for our boys.

After spending four nights in a room at St George’s Hospital, the nurse in charge referred us to Ronald McDonald House Tooting. We were able to move in on the very same day, offering us a much-needed place to stay close to our boys.

When we first stepped into the House, we felt an overwhelming sense of relief. We had so much anxiety about where we would be staying, especially as we were looking at around a six-month stay. Although we arrived late at around 10pm, the security guard who welcomed us was incredibly kind. He gave us a quick, quiet tour and handed us our keys. The following day, the manager came to speak with us, reassuring us that we could stay for as long as we needed, putting any remaining worries to rest.

We can’t express how much it meant to us that the financial and logistical burden of staying in London was lifted. On top of that, our room had an en-suite, which was an incredible relief. Being in the hospital environment all day takes a toll on your mental health, and having the ability to shower whenever we needed, in the privacy of our own space, was something we truly appreciated. It may seem like a small thing, but it made a world of difference for my wife and me during such a challenging time.

There were two main aspects of the House that benefited us the most: the privacy and the location. I can’t imagine how Anna and I would have coped without being able to go to our own private space to process everything that was happening. The room became our safe space, away from the constant beeping monitors, struggling babies and the constant anxiety of seeing your baby suffer. We could have a bit of time away, while still knowing we could nip back whenever we needed to.

Being right next to the hospital was a huge advantage for us. It allowed my wife to visit Rowan as often as she needed, while still being able to return for meals, a shower, or some rest. I was also able to work remotely from the room, and then visit Rowan during my lunch break and after work. This proximity meant we could be there for any emergencies, of which there were many, and it also allowed us to meet face-to-face with the clinicians whenever they needed to speak with us.

As our son became more aware, Anna was able to be next to him more frequently and for longer, thanks to the House’s location. We are convinced that this is one of the main reasons Rowan recovered so well from his surgery, being able to cuddle with his mum gave him the strength to pull through.

Honestly, I don’t know how we would have coped without the room at the House. Staying in our own home was never an option—being so far away from Rowan wasn’t something we could accept. We would have had to either look for local hotels, which likely wouldn’t have been financially sustainable, or rely on our friends in London to take us in. But given that Rowan’s recovery would take over six months, asking our friends to host us would have placed an unfair burden on their lives. In all likelihood, we would have ended up spending money we didn’t have on a place to stay just so we could be nearby.

One of the standout moments from our time at the House was getting together with other families to watch Eurovision. Another family that was staying in the House at the time, organised a special evening for anyone who wanted to join— eat Swedish food (since the event was hosted in Sweden) and score each country. It was a much-needed slice of normalcy and joy, helping all of us cope with our own journeys.

After everything we’ve been through, we finally got to bring our baby boy home at the start of August, with just a nasogastric(NG) tube to help him drink his milk (he still hasn’t quite figured it out yet!). He’s growing beautifully, enjoying tummy time, and babbling away. Truly, he is our miracle baby.

We were excited to leave the House, but only because it meant our baby was finally coming home with us for the first time. We wanted to show our gratitude as best we could, so we brought a few gifts, but honestly, we know we’ll never be able to fully repay them for everything they did. Since being discharged, we’ve visited the House once. Rowan has check-ups in London every three months, and we plan to bring gifts and treats with us each time we visit.