Gabriel's Story

Gabriel was born at 26 weeks gestation at Croydon University Hospital, weighing just 960 grams. He is now 14 years old. When we were in NICU, I remember desperately looking for hope that Gabriel would be fine. I particularly wanted to know the mid- and long-term outcomes of children born at his gestation and weight, and those were quite hard to come by. So, now that he is 14 years old, I thought I can share our story to give others hope.

We had a rough ride through the Neonatal Intensive Care Unit (NICU). Gabriel had bilateral grade 2 brain bleeds, PVL (Periventricular leukomalacia - a type of brain injury), PDA (Patent ductus arteriosus - a congenital heart defeat) and ROP (Retinopathy of prematurity - an eye condition) which  both resolved spontaneously, as well as bilateral hernia  which was managed with surgery at 38 weeks gestation. 

The biggest issue was that Gabriel also had restricted brain growth which led three consultants to suspect brain atrophy and give us the prognosis that Gabriel will never walk, talk, hear, see, recognise us, feed himself. In those words exactly. We were told it would be all of these conditions - or a selection - but the consultants left zero hope. I will skip the part about how utterly devastated we were and the trauma that resulted from such a prognosis. 

Gabriel was discharged on his due date. Fast forward 14 years, Gabriel walks and runs, hears perfectly, sees perfectly (everyone in the family wears glasses except him), feeds himself (preferably all contents of the fridge), talks too much including talking back, and definitely recognises us. 

He loves reading books, and has a predicted a GCSE flight path of A or A* in all subjects (plans to do triple science). Most importantly, he is a kind, compassionate, ever-curious young man who fully embraces his prematurity, as well as high functioning ASD (Autism Spectrum) and ADHD (Attention-deficit/hyperactivity) that make him quite quirky and funny! Yes, we are still ironing out things like time management aka getting out of the shower in time for school; making sure that he speaks on point instead of going off on a tangent; or emotional regulation (definitely too hot-headed). He is learning to manage his sensory issues and removing himself on time from situations which are too noisy or too bright. Physically, his only lasting souvenirs from his time in SCBU (Special care baby unit) are the scars from cannulas and the hernia operation. 

I hope this gives anyone reading our story a bit of hope and inspiration. Our premmies may be small but they are so strong, and the brain is amazing at rewiring and healing itself. 

One critical piece of advice I received is to always work with corrected age when checking for milestones (or comparing with full-term babies on the playground!). I believe this is common sense given our babies’ experiences and clearly insufficient development time in the womb. Gabriel was born minus three months old. I kept correcting his age for the first 5 years of his life. He hit most of his milestones on time for his corrected age. 

The other advice was to learn baby massage (it is relaxing for them, helps with bonding, and also helps with potential sensory issues), and to look after yourself. 

Many of you have been traumatised by the experience of having your baby early. You may want to consider reaching out to Bliss, another charity for premature babies. They helped me with a few PTSD (Post-traumatic stress) sessions to process everything that happened. In addition to the support from Ickle Pickles, for example at their wonderful Coffee Mornings, of course.

Social