“The charity saved us as a family”: Tobias’ story

When I was pregnant with my second son, Tobias, we found out at our 20-week scan that there could be complications. After that, I had weekly monitoring scans, and my medical team tried to rule out as many medical conditions as possible, but they were still unsure if our baby would be born with any issues.

Tobias arrived via c-section at 36 weeks, weighing a tiny 4lb 8oz. As he entered the world, he initially cried, but within less than a minute he suddenly stopped breathing. Tobias had to be transferred immediately to Royal Manchester Children’s Hospital for an emergency tracheostomy.

The following day, I was also transferred to Manchester and could finally see my baby properly for the first time. Tobias remained in hospital and at six weeks old, he was diagnosed with moebius syndrome, an extremely rare neurological disorder characterised by weakening or paralysis of the muscles in the face which control expression and lateral eye movements.

I was in denial about our situation for a long time. There was so much to take in and adapt to. All I could do was try to be as present as I could for Tobias. I found myself having to learn lots of new medical terminology, understanding what different machines did, and how to monitor the number displays and bleeping sounds – it was a lot. Not only did I have to be there for Tobias, but I was also trying to care for my other child, Isaac, who was only four years old at the time.

I found myself terrified to leave my poorly baby each night in the hands of ‘strangers’, but as the weeks and months passed, my concerns started to ease. Tobias began to stabilise, and we started to form amazing relationships with the incredible nurses on the ward.

It was a wonderful nurse at the hospital who provided us with information about Ronald McDonald House Manchester, a place where we could stay together as a family and remain close to Tobias. Early on in our hospital journey, a referral was made, when I’d shared my feelings of leaving my baby in hospital after I was discharged.

I remember the impression I got walking into the Manchester House for the first time – kindness. Coming over from the hospital environment with its many sounds and people, in comparison, it felt like such a calm haven. We were met with kindness from the start, greeted by the friendly and supportive House team who gave us a tour and showed us our bedroom – a place we’d call ‘home’ for the next nine months.

Having a place to call our own, just across the road from Tobias, allowed us to remain together as a family. It was so good for Isaac to have a special and familiar place, where he could retreat to with one of us, when the ward became too much for him. The space allowed him to play, have fun, and be a child, which was so important given the traumatic time our family was going through.

Being so close to Tobias allowed us to maximise our time with him, managing a routine of being with him from the first thing in the morning, until the last thing at night. I was able to run over, countless times during the night, and be by his side for emergencies and procedures, and to support and advocate for him when he needed me most.

We’ve stayed at the Manchester House three times now; initially for nine months from 2022 until 2023, then we returned later in 2023 for a shorter stay, and we did another nine months from 2024 until earlier this year. Our second long stay enabled me to keep my newborn baby Chester with me while his big brother Toby was back in hospital. We all received so much support from the staff; they were always there, whether it was to listen to me rant about my worries at the end of a full-on day in hospital, or to simply stick the kettle on and make us laugh. My favourite memory from our time spent at Ronald McDonald House, was Christmas 2022. We worked hard with our medical training, so that Toby was finally granted some home leave and a Medical Pass and was able to come over to the Ronald McDonald House just in time to meet Santa with his brother.

Ronald McDonald House Manchester will always be such a special place for us as a family. It’s the home my youngest son Chester lived in for his whole first year of life. We had many birthdays and celebrations at Ronald McDonald House, that the kids will remember forever. We love you guys!

Without the House, I don’t know how we would have managed as a family. I would’ve been in the position of having to choose between my children. The travel would have been completely unmanageable, especially as I don’t drive; it doesn’t bare thinking about. To anyone who’s ever donated to Ronald McDonald House Charities UK – thank you! This charity saved us as a family, allowing us to be close to our baby when we needed it most. I don’t think I could ever put into words just how grateful we are.

Leaving the House always evokes a mixture of emotions, as you leave new friends behind – both the amazing staff and other parents going through similar struggles. But the excitement of a discharge and being able to get home with Tobias is just brilliant, and his brothers can go to sleep at night knowing we’re all together under the same roof. It’s an emotional rollercoaster, that’s for sure!

My advice to any other family on a similar journey is to breathe! Take one step at a time. Make time for fresh air and plenty of coffee! And make use of all the amazing facilities at Ronald McDonald House – it really does make such a difference.