Max

Max was born six weeks early. His parents knew from pregnancy scans that there would be complications at birth, but nothing could have prepared them for being transferred 70 miles from home, or for their newborn baby to be whisked into surgical theatre within 24 hours of mum, Anna-Marie, giving birth.

At the time, they had no idea that this was just the start of Max’s hospital journey. Anna-Marie shared their story:

---

“While Max was in that first surgery, I realised I had nothing. I vividly remember walking from St Michael’s Hospital to Primark in my slippers because I needed basic clothes to wear. I had been admitted to hospital two weeks earlier and hadn’t been home since. All I had was my hospital bag. We had no idea what we’d need, where we’d stay or how long we’d be away from home. That was the first day of an initial nine-month stay.  

During surgery, doctors discovered Max had exceptionally narrow airways, along with several other complications affecting parts of his body. He was diagnosed with VACTERL association, a condition that means he had multiple problems at birth affecting multiple organ systems. VACTERL is an acronym for the main symptoms that make up the condition: V (vertebral defects), A (anorectal anomalies), C (cardiac defects), T (trachea-oesophageal), R (renal abnormalities) and L (limb abnormalities). To be diagnosed, you need to have more than three. Max had several. 

Max needed to be referred to Great Ormond Street Hospital, but while we waited for a date, he had to remain under the watchful care of the Neonatal Intensive Care Unit at St Michael’s (NICU).  

We had arrived in Bristol with no expectation, no preparation and no idea of what would happen next or how long we’d need to stay.  

Within a couple of days of arriving, we were given a room in Cots for Tots House, one of The Grand Appeal’s family accommodation buildings that supports families on NICU. Walking into that home felt like a breath of fresh air. We had a space to call our own. That home gave us an unexpected community of support that we’ll never forget, and we’re still in touch with many parents from our time there today. 

Max stayed on NICU until he was three months old. Because of his age, he then needed to be transferred to Bristol Children’s Hospital. We moved down the road with him into Paul’s House, another of The Grand Appeal’s family accommodation buildings, directly opposite the hospital.  

It was during that stay that Max became very unwell and was moved to the paediatric intensive care unit (PICU). He had to be airlifted to Great Ormond Street Hospital for an urgent nine-hour surgery to help his airways and heart. I stood outside Paul’s House and watched the helicopter take off with Max inside. Not being able to go with him or help him was indescribably difficult. While he was in hospital, I knew I couldn’t help medically, but being by his bedside always felt like the one thing I could do. 

It was a rare and complex operation that is only performed 12 times a year by one surgeon in the UK. They told us they see one particularly complex case each year, and that year, Max was that case. He remained on a ventilator for eight weeks and had to be resuscitated multiple times.  

At nine months old, Max was finally well enough to return home for a while. 

In 2024, it was time to return to Bristol Children’s Hospital, and for us to return to Paul’s House. Max needed bowel surgery, an anoplasty and a reversal of his stoma. By this point, Max was that bit older, more aware, more in need of play and entertainment. During that stay we discovered even more of the little touches that make the hospital and The Grand Appeal so special, from the playrooms to music therapy and gifts for parents on special occasions. 

It was then that we began fundraising for The Grand Appeal. My mum had passed away when I was pregnant, so we set up a memorial fund in her memory, as well as a fund in Max’s name. It meant she could be part of his life too.  

Later that year, we went to the very first Grand Walk. A new fundraising event organised by the charity to offer an inclusive family day out and a sponsored walk. We attended with many other families that we’d met along our journey. It was such a special day. 

We missed the event the following year as, in 2025, it was time to focus on Max’s leg. He was now almost two, and keen to move. All his care and operations up to this point had been critical and lifesaving, so we had no option but to follow the process. This time, there were decisions to make.  

Initially, his orthopaedic team had tried serial casting, a treatment that uses a series of frequently changed casts to slowly help joints move and stretch, but it was unsuccessful. We had two options presented to us: begin a programme of leg reconstruction that would mean many more surgeries over years, or to amputate his leg.  

There was nothing easy about making that decision, but we were driven by what would be the kindest thing for Max. In his short life, he had already undergone far more surgery than many would in a lifetime, a total of 30 anaesthetics. We didn’t want that to continue long into childhood, so we decided to proceed with amputation.  

Last October, Max received his first prosthetic leg. I will never forget stopping at Sainsbury’s on the way home, and the aisles being full of Halloween sweets. Max got up and walked for the very first time. He had only been wearing his new leg for an hour. 

Now, we’re at home together. Max has started pre-school; he is a very cheeky three-year-old and, this September, he will take on Grand Walk. This time, he will take as many steps on his own as he can manage, raising funds for the charity and hospital that not only saved his life multiple times, but also gave us fond memories during the hardest period of our lives.   

Max still has ongoing bowel issues and remains under the care of Bristol Children’s Hospital, but we now live a pretty much normal life. This once seemed an impossible dream. There will never be enough thank yous for that. What we can do is keep donating, keep fundraising and keep telling our story, so other families know they’re not alone. Inside a world no family ever wishes to enter, there is a very special place and a very special community waiting to hold them up.”