Earlier this year, Noah officially graduated from James Hopkins Trust as he celebrated his 12th birthday. Having had received respite from us at James Hopkins Trust since he was just six months old, his story is a powerful reminder of the depth and duration of support that we provides to children with life-limiting and life-threatening conditions and to the families who love and care for them. As Noah begins a new chapter, we reflect on the journey he and his family have been on, and the role we have played in walking alongside them every step of the way.
A Sudden and Life-Changing Diagnosis
Noah’s mum had a fairly typical pregnancy, or so she thought. ‘I didn’t know anything was wrong during my pregnancy,’ she shared. ‘I did have swollen glands quite often, but was told it was unrelated to the pregnancy.’ It wasn’t until she went into labour that the first warning signs appeared. Her temperature was high and required antibiotics. When Noah was born, he had a distinct
blueberry rash, a tell-tale sign of infection. He was immediately taken to intensive care, placed on oxygen and a NG tube. ‘I only had a quick cuddle before he was taken away. It was hours later, after I came out of theatre, that I saw him again.’
In the days that followed, tests ruled o
ut toxoplasmosis and eventually confirmed Noah had CMV, cytomegalovirus. The diagnosis began a long hospital stay, stretching 50 days from his birth.
Understanding CMV
CMV is part of the TORCH group of infections that can cause complications during pregnancy. TORCH infections are a group of congenital infections that can be transmitted from a mother to her child during pregnancy, delivery, or after birth. The term “TORCH” stands for Toxoplasmosis, Others (like syphilis, varicella-zoster, HIV, and parvovirus B19), Rubella, Cytomegalovirus (CM
V), and Herpes simplex virus (HSV). These infections can cause a range of serious health problems in infants, including developmental delays, hearing and vision problems, and even death.
While some women may simply have cold-like symptoms, the virus can have devastating effects on unborn babies, particularly if it’s the mother’s first time catching it. A simple TORCH test could determine if a woman has previously been exposed and developed antibodies.
In Noah’s case, CMV caused irreversible damage: he is deaf, blind, epileptic, tube-fed, has scoliosis and double hip dislocation, and experiences frequent seizures. ‘Noah is on par developmentally with a 1-month-old baby, but in a 12-year-old’s body. He requires 24/7 care.’
A Lifeline Through JHT
At just six months old, Noah began attending the James Hopkins Trust. ‘It started with crèche days, then overnight stays.’ his mum explained. ‘JHT became a local safe haven for us. The support, not just for Noah but for the whole family, has been incredible.’ From supporting the family through multi-agency meetings, to providing much-needed respite during subsequent pregnancies, JHT helped them find community, normality, and breathing space. ‘They introduced us to other families who are now some of our best friends.’
Mother and Carer
Becoming a first-time mum is hard enough, but Noah’s diagnosis turned their world upside down. ‘I went from never having changed a nappy to being a full-time carer. It still feels like a blur with the endless appointments, failed tests, seizures, intensive care alarms… It was heart-breaking. ’Despite the challenges, the family went on to have more children, though not without heartache. ‘We had a miscarriage after Noah, then had our eldest daughter, another miscarriage, and then our youngest. Having them close in age helped me power through with less time to dwell on the fear that surrounds us due to Noah’s condition.’
Their daily life is shaped by Noah’s needs, from mobility challenges, the need to adhere to schedules and access concerns, to name a few. ‘Everything we do whether it be holidays, shopping, even walks, has to be adapted.’
A Family’s Strength
Noah’s mum credits her parents, who moved from Birmingham to help ease some of the load that comes with being a parent and especially a parent to a life-limited child, ‘They help with the girls’ activities, pick up medicines, and have made a huge difference to our lives.’ She also cr
edits the James Hopkins Trust for making their life more manageable. Still, the emotional and physical toll is constant. ‘I work to feel a sense of normality but I also do the school runs, manage Noah’s medical needs, juggle all the admin and so much more. It’s often overwhelming and overstimulating. We rarely get time as a couple, but we make it work in our own way.’
Life Beyond JHT
Noah is now 12 years old. ‘We never thought we’d even get to one birthday. He is life-limited and at risk of sudden death due to epilepsy, so we cherish every moment.’ As Noah ages out of JHT services, the family faces a bittersweet transition. ‘We are devastated. JHT gave us so much from respite, support, friendships, and precious time to be a couple. I wish the journey could continue.’ They’re left with beautiful memories, photos, and moments of joy that have carried them through some of the hardest days. ‘We love Noah every minute of every day. And we’ll keep making memories for as long as we can.’