The House was our 'constant': Louisa's story

At the end of January 2022, Vicki and Dave’s second ‘miracle’ IVF baby was born and they started on a journey they could never have imagined. Shortly after her birth at the Royal Hampshire County Hospital in Winchester, baby Louisa, a younger sister to then four-year-old Oliver, had to be intubated and put on life support, after struggling to breath.

Following a month-long stay at Great Ormond Street Hospital (GOSH) in London, Louisa was diagnosed with Cat’s Eye Syndrome, a rare condition caused by a defect in chromosome 22.  Louisa was eventually able to be transferred to Southampton Hospital, where she was hospitalised for six months. During her lengthy hospital stay, her parents took up the offer of free ‘home away from home’ accommodation at Ronald McDonald House Southampton, allowing them a “constant” during a stressful and tumultuous period.

Louisa entered the world very quickly and immediately medical staff realised she was struggling to breathe, so she was whisked away.  Three-and-a-half hours later we were told that, despite their best attempts, doctors had been unable to secure a safe airway and we should prepare for an unthinkable outcome. Thankfully, with amazing expertise, our tiny warrior was intubated and although on life support, she at least had a chance of survival.

She was taken to Princess Anne Hospital in Southampton, where she spent one night on the Neonatal Intensive Care Unit (NICU) before being transferred to the Paediatric Intensive Care Unit (PICU), where multiple other complexities were identified. We spent four nights in Southampton, and this is when we had our first brief stay at the Ronald McDonald House before being transferred to GOSH in London.  Whilst our lives had been turned upside down overnight, the House in Southampton provided somewhere safe where we knew we were just minutes away from our daughter. 

During our month-long stay in Great Ormond Street, Louisa was diagnosed with Cat’s Eye Syndrome, a rare condition caused by a defect in chromosome 22.  The features of this syndrome that are currently identifiable in Louisa include, a coloboma in her right eye, a cleft palate, ear skin tags, a small jaw causing a compromised airway and anal fistula.

On 1 March we returned to Southampton General Hospital and Ronald McDonald House became our home for the next six months.  Unfortunately, Louisa only managed a few days in the Paediatric High Dependency Unit (PHDU) before becoming dangerously unwell again and she was rushed to theatre to be intubated which once again, proved very difficult.  A week later a decision was made that Louisa required a tracheostomy, as her airway was too unstable without one. During the following months Louisa remained in PICU, PHDU and then the Paediatric Medical Unit (PMU), as we learnt how to care for all her needs whilst she threw many curveballs in along the way.

During all our turmoil, Ronald McDonald House was our constant. With another young child at home and Dave needing to return to work, I spent much of my time on my own, but the House made sure I never felt alone. It was our calm space, our safe space and at weekends, our family space. Practically, the facilities were amazing, and it was so reassuring to be moments away from the hospital. You are also surrounded by other families who you know understand first-hand the uncertainty, anxiety, and unpredictability of having an unwell child.

One day whilst at the reception desk, I spotted another mum, Ruth, with her daughter Gabi. Ruth’s little boy Ezra was born prematurely and now aged one, he has only spent around 20 days at home since his birth. We struck up a conversation and we’ve been inseparable since, having forged an amazing friendship through our shared experiences. Although no two family stories are the same, people in the House understand what it is like to have an unwell child.

I was lucky enough to meet people who would check in and see how I am doing, as well as Louisa. Ruth and I shared many tears, worries and fears together. But we also shared laughter, hope and practical support. When you are in the House for a long time, these friendships are your lifeline. We celebrated the kids’ birthdays together, had play dates and even went on a day out together.

Our son Oliver loved his weekly sleepovers at the House and since we have been home, he has told us on several occasions how much he misses the Ronald McDonald House. We loved attending family events the House put on and staff went above and beyond on Oliver’s 5th birthday to make him feel special. We were also grateful for the time individuals and companies gave to provide free pampering sessions, pizza nights and family photo sessions.

Louisa was finally discharged from hospital on 12 September. Although relieved to be able to take her home, it was a difficult transition, having been in the House since January. Not only did we have to get used to being at home as a family of four for the first time, but we also had to adjust to life with a child with complex needs.

We have carers at home part-time, who’re amazing. Louisa adores them but there’s no denying that it is different to anything we have experienced before and there’ve been times when they’ve had to wake us up in the middle of the night when Louisa has had a problem. We’re still navigating everything, and Louisa’s condition is so rare, there are a lot of unknowns. She’s due to have her cleft palate repaired and her bowel repaired, having already had eight general anaesthetics in her short life so far. The good news is that she breathes on her own and doesn’t require oxygen. She also has no heart or kidney problems. We count our blessings.

Reflecting on our time at Ronald McDonald House Southampton, I will be forever grateful to the House and the team who make it as wonderful as it is. The staff shared our highs and our lows, our tears, and our laughter. There was always someone to talk to whatever time of the day or night and nothing was ever too much trouble. We will never be able to put into words just how grateful we are to everyone at the Southampton House and to the Charity as a whole. It is safe to say that without The Ronald McDonald House, the most challenging seven months of our lives would have been even harder.