“We were offered a safe sanctuary”: Matilda’s story

Baby Matilda entered the world five weeks early and what should have been a time of joy and happiness suddenly turned into a period of fear and uncertainty. Mum Emma and dad Joe were faced with the news that Matilda required emergency surgery at just 10 hours old. Unfortunately, further surgeries and an unexpected diagnosis meant that Matilda and her family would be spending months in hospital. Thankfully, Ronald McDonald House Manchester were there for the family in their time of need by providing them with the accommodation and support to aid Matilda’s recovery.

I had several episodes of reduced movements, and following a routine scan, the doctors found fluid around Matilda’s abdomen. As nobody could quite pin-point where it was coming from, I underwent an amniocentesis and various other scans to rule out any significant genetic problems.

The day I gave birth, I had reduced movements again and this time the team at Royal Preston Hospital scanned me for around 20 minutes and Matilda wasn’t moving at all – at this point I was told she needed to be delivered right away.

I gave birth to Matilda later that afternoon, five weeks early, via emergency c-section in Preston, weighing 6lbs exactly. As soon as she was born, she was whisked away to the Neonatal Intensive Care Unit (NICU) and immediately put on BiPAP (a type of non-invasive ventilation that helps with breathing). Not being able to hold or even see my little girl was very upsetting but I knew she was in the best possible hands with a big team of doctors and nurses supporting her.

Matilda’s stomach was very distended, and we were informed by doctors that she would need exploratory surgery to find out exactly what was happening. This meant that Matilda would need to be transferred to Saint Mary’s Hospital in Manchester for specialist treatment. Joe travelled over to Manchester with Matilda in an ambulance, whilst I stayed in Preston as I was too unwell to be transferred at the time.

At only 10 hours old, Matilda underwent an emergency exploratory laparotomy (open abdominal surgery) to investigate further and find out where the fluid around her abdomen was coming from. Surgeons discovered that her intestines covered in meconium (a newborn’s first fecal matter), and she also had sepsis so was very unwell.

They couldn’t find the hole in Matilda’s bowel, and she was becoming increasingly unstable, so the surgical team decided to give her antibiotics and let her recover for a few days before returning to theatre. After two days, she had further surgery and they managed to locate the hole in her bowel and repair it. To allow the section of bowel to heal, they created a stoma.

Later that week, results came back from her newborn heel prick test which indicated that Matilda had cystic fibrosis. We were both in shock. Nobody in either of our families had lived with this condition and we immediately began to worry about what type of future she would have with this life-limiting condition. The team at Saint Mary’s were simply amazing and reassuring, answering all our questions and helping us overcome some of our fears.

During our time on the NICU ward, we were told about Ronald McDonald House Manchester by one of the lovely nurses, who explained the process of applying for a bedroom and helped to make the whole process very simple under such stressful conditions. We were referred to them straight away and shortly after we were so pleased to be offered a bedroom, following the few sleepless nights we had on the NICU ward.

We had been really concerned about where we would stay, once I had been discharged from hospital, looking at potentially staying at hotels or a local Airbnb which would have drastically affected our finances.  As a worst-case scenario, we would have had to do a 136-mile round-trip every day to be by Matilda’s side. I was so worried about who would be looking after my little girl and how often we would get to see her without somewhere to stay close by.

I remember when we first walked into Ronald McDonald House Manchester, I felt calm for the first time in over a week. The House was beautiful, clean and welcoming. The staff were so wonderful and took the time to show us around with a tour, even though it was quite late at night. We were so pleased to hear that we could stay for as long as we needed whilst Matilda was recovering at the hospital. The feeling of finally having somewhere safe and comfortable to sleep at night, as well as being able to shower and have some time to relax as a couple away from the alarms and beeps in NICU, was incredible – we felt beyond grateful to this wonderful charity.

Over the course of the next three months during, Matilda had to overcome bowel blockages and issues with weight gain. Every week she seemed to be making progress and then something would happen which would set her a few steps back.

What eased some of the struggles was the House, knowing we were never far from Matilda’s bedside. It was the best feeling in the world. Ronald McDonald House Manchester offered us a safe sanctuary to come to terms with Matilda’s condition and gain some much-needed rest in the evenings. Being with Matilda as much as possible was our number one priority; the fact that we were so close meant that we could get to her bedside within a matter of minutes.

We eventually left the Manchester House to return home with Matilda just before Christmas 2024 and everywhere was beautifully decorated with lots of festive activities for the families staying. One of my standout memories was when we received a set of Christmas bedding to get us in the festive spirit – this was a lovely gesture and really made us smile. I was really excited to be going home and settle into our new family routine together, but at the same time, we would miss the friends we’d made along the way.

If anyone ever finds themselves in a sudden and unexpected situation with a child in hospital, we would advise them to see if there is a Ronald McDonald House nearby. Having their support and a place to stay close by alleviated some of the stress that we found ourselves in. It was so nice to have somewhere to call home for the three months we remained in hospital. We would encourage anyone to donate to this incredible charity, and we will definitely be taking part in some fundraising to give back, in the not-so-distant future.