Nina’s Story, by her mum, Naomi
Nina has turned our life upside down – but in a most fantastic way! Her presence in the world brings joy, hope, laughter, knowledge, and personal growth to everyone she meets. So, let us go back 3 years and see how her story unfolds…I first heard that Nina had ventricular megally (enlargement of the ventricles in her brain) at her detailed ultrasound scan. I was sat in a bland beige room, with a box of tissues, waiting for a consultant to arrive, knowing full well it meant something was up!
Thankfully, my sister was with me, and we told each other with nervous laughter “we are in THAT room!”. As the pregnancy progressed, we were told she may be ‘normal’, may have a learning disability, or even require surgery. We were offered the usual – an amniocentesis and of course, a termination. All this was based on the size of her ventricles. As Nina’s parents, Stuart and I were just happy we had a little girl on her way, and she would be loved no matter what. Nina was born 4lb 11.8 oz. You may ask why such accuracy with her weight? Well, that 0.8oz was the beginning of the battle to get her to reach a goal weight of 5kg, ready for heart surgery.
Nina had a complete atria-ventricular septal defect (in total 5 holes, one of which was rather large). I remember the consultant walking into our side room, and he rolled up, leaflets in hand. Nina was 1 week old and it was 7pm on Valentine’s Day! He was kind and thoughtful in his delivery of this news. Looking at Nina, she was so small. This was going to be tough.
Nina suffered from reflux; she was like the exorcist when she vomited! It was disheartening and, at times, frustrating. It often meant starting feeds over from scratch. Though we had the BEST dietitian, and she worked with us to support Nina to gain weight. She listened, tried our ideas and came to the rescue when we were told Nina may need ‘temporary’ surgery (this would still be open heart surgery). Nina had weekly weigh-ins, and we celebrated gaining 10grams at a time! Our plan with Nina worked; we used a nasogastric tube and Duocal (added calories) as support, reaching 4.91kg before surgery.
At times, parents cannot help but compare your child to others, and it was clear her heart defect had impacted on her physical development. Following surgery, Nina began to thrive, her development came on, and she gained her independence with time. She bum shuffles, crawls and has successfully climbed the stairs of a three-storey building as of this month. Determination is something she has in abundance!
She is the most social child ever and enjoys an adventure or two! She has modelled for Joules Oliver clothing with Next, loves to explore any area, she has been sea kayaking to puffin island, mountain biking down black routes and is the centre of attention at nursery. This girl knows how to work a room! We have been supported by many different professionals in the past 3 years, for which we are thankful for.
However, sometimes it has not always been an ideal experience, for example, the registrar shouted it from the roof tops that she thought Nina had Down syndrome and then just walked off! The whole ward fell silent, and we were just left! I am fortunate to feel confident speaking to healthcare professionals, as I am one myself. I try and make a difference and educate others, not just for Nina but for others with Down syndrome and learning disabilities too.
Nina has attended multiple academic conferences and built herself quite a reputation within the radiography academic community. She has become the inspiration behind delivering several presentations to student nurses and radiographers. This is how we try to give back for the support we have received, sharing our knowledge, and understanding of Down syndrome and improving patients’ and families’ experiences whilst in hospital. This is only one example of the positive impact Nina’s life has bought to others.
I was told I would be an advocate for Nina when she was born but this community I find myself in is so supportive, we act as advocates for each other too! Nina makes people reflect on what is important in life: love, kindness, happiness, determination, and opportunity. I cannot imagine ever being without her, and like so many others, I would not change her or her journey! Every moment has made her who she is – my perfect, funny, mighty warrior!