My pregnancy with Paige was mostly typical, lots of morning sickness, but nothing unusual. At our 20-week scan, we learned Paige had a rare brain condition called Rhombencephalosynapsis. Doctors warned us she may face major challenges and poor quality of life. Termination was discussed, but we knew we had to give her a chance. She was born at 42 weeks via C-section after a long, slow labour.
Feeding was a struggle from the start. She’d take a full bottle one day, barely anything the next. At 12 weeks, after weeks of poor weight gain, she was fitted with an NG tube. It was tough, she pulled it out constantly, and we couldn’t replace it ourselves, so we were always back and forth to hospital.
Life revolved around her feeds. Everything had to be planned around them. She now has a PEG, but still won’t eat much. She talks about food, asks for chips or peas, but rarely takes a bite. It’s heart-breaking.
At four months, Paige had a brain shunt placed. Thankfully it’s stable so nothing needs to be done with it, but the worry is always there that it may get knocked. She’s hit her milestones late but with so much determination. She walked just before turning three and hasn’t stopped since. She’s funny, fearless with people, and full of life.
Paige has been coming to James Hopkins Trust since she was 7 months old. It’s given us precious time to recharge and be more than just carers. She loves her Kites sessions, and we love the Stay and Play sessions and the garden- it’s one of our favourite family spaces.
