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It made all the difference: Filomena's story

October 19, 2022

When mum-of-six Sarah took her new-born baby Filomena home from hospital at three days old, she had no idea of the difficult weeks ahead of her and her family. At just a week old, Filomena had to be taken to A&E, after she became unwell. Doctors were concerned enough to admit her, and she was transferred to a children’s hospital, 1.5 hours’ drive away from the family home.  Sarah would soon discover the ‘wonderful’ Ronald McDonald House Cardiff, where she and her family were able to stay, moments’ away from where baby Filomena was being treated for respiratory syncytial virus (RSV). 

Guest blogger: Sarah

I was 36 weeks pregnant and suffering from Covid-19 when I gave birth to my sixth child, Filomena, at Glangwili General Hospital in Carmarthen. I’d gone in to be induced, as I had intrahepatic cholestasis of pregnancy (ICP), a potentially serious liver disorder that can develop in pregnancy, and that’s when I tested positive for coronavirus. I also had gestational diabetes, which meant that when she was born, Filomena couldn’t regulate her sugar levels, so she was in the special baby care unit for two days, but at three days old, she was well enough to be discharged and we went home thinking everything was alright.

Four days later, she started to become unwell. I first noticed something was wrong when she didn’t wake for her night feed. My husband Richard and I struggled to wake her, and we spotted that her lips looked slightly blue. We rang the midwives, but they were unable to come out to us. Eventually, after a phone call to the doctor’s surgery, I took Filomena to A&E in Carmarthen. When we got there, it was so busy, I sent a message to Richard saying that we were likely to be waiting all day to be seen. However, within minutes we were called straight through.

The staff in A&E were fantastic. They soon realised Filomena was unwell and sent her to the Paediatric Ambulatory Care Units (PACU) on the children’s ward. It took a doctor in there less than a minute to notice Filomena’s apnoea, which meant her breathing was stopping and starting. She was swiftly taken to the High Dependency Unit (HDU) and I was left feeling completely lost.

I didn’t know exactly what was going on, but it wasn’t long until they came in to tell me that the doctors were using a CPAP machine on her, to try to improve her breathing. Unfortunately, it didn’t have the desired effect, so a decision was made to take her to theatre to be sedated, in order to put her on a ventilator. Having been born four weeks early, Filomena’s airways were very small, and she was struggling.

Thankfully, Richard made it to Glangwilli in time to see Filomena just after she came out of the operating theatre. He was able to give her a kiss and say goodbye, as doctors were in contact with specialists in Cardiff and it looked like she was going to be moved to a different hospital. They arranged for the Wales and West Acute Transport for Children (WATCh) Service to take Filomena to intensive care at Cardiff’s Children’s Hospital (Noah’s Ark). I accompanied her in the ambulance for the 1.5-hour journey to Cardiff and Richard went home to look after our other children.

When we arrived at Cardiff, Filomena was given tests and lumbar punctures. The upshot was a positive result for the winter bug, Respiratory syncytial virus (RSV). She was placed on three different antibiotics, given physiotherapy, and was found to have a partially collapsed lung. The care from all her nurses, doctors and physios was exceptional. Over the next two weeks she slowly recovered and made steady progress, which enabled her to be transferred back to our local hospital in Carmarthen. There, she was weaned off oxygen and began to come off the tube feeds. In total, she spent almost three weeks in hospital. 

For the duration of Filomena’s stay in Noah’s Ark, we were lucky enough to be given a room at the Ronald McDonald House in Cardiff, which allowed us to be at Filomena’s side. I’d travelled to Cardiff with just the clothes I was wearing, and barely any personal belongings. The House not only provided a beautiful room in which to stay, they also gave me pyjamas, sanitary products, a bag of toiletries and some food. I was so grateful for their thoughtfulness.  

We cannot thank everyone at the Ronald McDonald House enough, their support was truly remarkable. Before our experience of staying there, I didn’t have a clue what Ronald McDonald House Cardiff was. I couldn’t believe how lovely the room was. It even had a bath! Everything was so nice, and I wasn’t expecting any of it.

The staff could see the trauma in my face when we arrived, so they didn’t pressure me to fill out the paperwork immediately, instead allowing me to settle in and take a breather first. Everyone was so friendly; the housekeepers were lovely and talked to me about how I was doing. Although Richard spent much of the time looking after our other children at home, for a few nights he joined me with our two youngest boys, Felix, who’s one, and Mylo, who’s three.

At first, I was worried that it might be a problem having a baby and a toddler running around, waking in the night, and making noise, but the staff were so welcoming to all of us. They acknowledged the children and didn’t mind them being there at all. It was so nice and relaxed. It made all the difference.

At 14 weeks, Filomena is doing amazingly well, gaining weight, and becoming a little character. We are so grateful to everyone involved in her care at Glangwili and Cardiff. They were all truly wonderful, caring, and professional at all times. We will also be forever indebted to Ronald McDonald House Charities UK. Everyone at the House made what was an extremely worrying time for us a whole lot easier and supported us all until we were able to leave the hospital. They will always be in our hearts and memories.

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