"Her courage inspired everyone”: Charlotte’s story

Parents Danielle and Kirk received the devastating news that their baby, Charlotte, would be born with severe brain abnormalities and a large tumour. Although doctors advised termination of pregnancy, they chose to fight for her life and what followed was a journey of courage and hope with three major surgeries in the first three weeks of Charlotte’s life. Being 40 miles away from home, Danielle and Kirk needed to find a way to be with Charlotte as much as possible and for 32 nights, Ronald McDonald House Tooting became a lifeline for them, keeping them close to their daughter when they needed it most.

At 36 weeks pregnant, during an ultrasound, our local hospital discovered that Charlotte had fluid on her brain and advised us to terminate the pregnancy. We made the decision to bring Charlotte into the world, and we were referred to St George’s Hospital in London. Further scans revealed something even more serious. Alongside the fluid, Charlotte had a large tumour that had crushed one side of her brain. The doctors warned us that she could be delivered brain dead, blind, or unable to move the left side of her body.

We were given some very difficult options: palliative care or treatment involving surgeries and chemotherapy. Despite the risks, we decided to give her a chance at life. A neurosurgeon explained that Charlotte might not survive birth and that every surgery carried a huge risk, but we chose to try. A C-section was scheduled because her head was too large for a natural birth.

Charlotte survived the birth, and she was immediately taken to the neonatal intensive fare unit (NICU), and to our surprise, she moved all four limbs, defying expectations. That’s when we knew she was a fighter, and we had made the right choice. At just 24-hours old, she underwent her first surgery to insert an external ventricular drain (EVD) that would remove as much fluid as possible from her head. Over the next week, nearly three litres were drained.

At six days old, Charlotte was transferred to Great Ormond Street Hospital (GOSH) for her second surgery which was an embolisation to cut off the tumour’s blood supply, allowing a biopsy and reducing bleeding risk during removal. That surgery was successful, and five days later, she returned to St George’s for the major tumour removal operation. At just 21 days old, Charlotte survived a seven-hour procedure, with 99% of the tumour removed. A biopsy revealed that it was a grade-two tumour and while there’s always a chance of recurrence, she currently doesn’t need chemotherapy. Charlotte will have regular scans in the future, and we hope the remaining one percent dies off naturally.

Her recovery was incredible. Within a few days of surgery, she had moved from NICU to the high dependency unit, then to special care, and soon we were preparing to go home.

Our biggest fear was leaving the hospital without our baby, and we were pleased to learn about Ronald McDonald House Tooting just two days after Charlotte’s birth. Rachel, the House Manager at the Tooting House helped provide us with accommodation, and when Charlotte needed surgery at GOSH, she ensured we had a bedroom again upon our return. We were amazed the first time we walked into the House. It was beautifully decorated, spotless, and the bedrooms were comfortable with en-suite bathrooms. The staff were so kind and supportive.

Staying at the House made an enormous difference. It allowed us to stay close to Charlotte, cook proper meals, shower, and wash clothes – things that can feel impossible when ‘living’ in a hospital. It also gave us a community of parents who understood what we were going through, and staff who genuinely cared about Charlotte’s progress. Nurses often told us how much it helped Charlotte’s recovery to have us nearby, and being just minutes away meant we could respond quickly if anything happened.

Without Ronald McDonald House Tooting, we would have faced huge costs for hotels and travel, as we live too far to commute. We stayed twice – first for four days, then for five weeks after returning from GOSH. Leaving the House was bittersweet, but we were thrilled to be going home. We’ll definitely be visiting again when Charlotte returns for scans and check-ups. One of Charlotte’s big brothers, Thomas, came with nanny to collect mummy, daddy, and Charlotte from hospital and was super excited to have all three of us coming back home.