Nina’s Story
For a long time, there has been a quiet question mark around Nina’s diagnosis. From early on, many people felt that what they were seeing didn’t quite fit expectations. At the SOFT Family Day in Birmingham, several parents assumed Nina must be Mosaic, simply because they had never seen a baby with Trisomy 18 doing what Nina does. Even her neonatologist, Dr Beata Pozwinska — a truly wonderful paediatric specialist — shared that in over 40 years of clinical experience, she had never seen a Trisomy 18 baby like Nina. I’ll admit, I had my own suspicions too, wondering privately if perhaps she had Partial Trisomy 18.
When Nina’s new consultant joined her care, he was equally unconvinced and felt strongly enough to request further genetic testing. After some determined coordination (and finally getting everyone in sync at the right moment), we managed to get the blood sample taken. This week, when Nina was 17 months old, the results came back — and we finally have a definitive answer.
Nina has Full Trisomy 18.
But honestly? Nina doesn’t care in the slightest. She’s far too busy redefining what Full Trisomy 18 looks like and what it can mean.
Every day, she continues to surprise us with both brand new milestones and the quiet, ongoing magic of her determination. Nina is breastfeeding, standing (with an incredibly strong lower half, even if her torso and arms need a bit more help), and is starting to hold her own spoon, happily taking purées orally. She “brushes her teeth” — not quite in the traditional sense, but with great enthusiasm, joyfully waving her toothbrush around like it’s the best toy in the world.
She’s babbling, finding her voice more and more, playing with her toys, gripping them tightly, chomping on them, and making sure they know who’s boss. And she’s growing — really growing — now weighing in at 17 pounds of pure cuteness at 17 months old, something we celebrate every single day.
Nina may now have a definitive diagnosis, but what she’s teaching us goes far beyond any label. She is showing, in her own extraordinary way, that expectations do not define potential — and that Full Trisomy 18 can look very different from what the world assumes.
You can find out more about Shakara and Nina’s journey on their GoFundMe Page here: https://www.gofundme.com/f/support-baby-nina
