Nivan’s Story

The excitement we felt going to our 20 week scan turned to despair as we heard my cervix was already dilated and I would miscarry our baby, even though he was absolutely fine. I was admitted and we spent the night waiting and thinking. The next morning, wanting to do everything we could for our baby, we talked to the doctors about the possibility of a cervical stitch (Cerclage) they were of the opinion it probably wouldn’t help but finally, one very kind very senior consultant agreed to do the procedure and that kept my baby in for another two weeks. 

During those two weeks, we tried to be positive. We prayed and meditated and I ate only healthy food to keep my baby healthy inside as long as possible but on 1st Nov 2016, at 23 weeks, I went into labour and my little fighter decided to come early to explore the world.

Our little hero, Nivan Patel, was born at 23+4 days weighing 660 gm. We had millions of questions about his survival, progress, lungs, cognition, motor functions and many more…but with so little data available on 23 week premature babies’ long term outcomes, and as every baby is different, most of our questions were unanswerable and it was a waiting game. That first week was the worst in our life; completely in the dark, with no idea what would happen.

We looked for answers everywhere, the internet, asking other parents, desperate to hear it was possible our son could survive and develop normally. But it took a few weeks for any certainty.

Nivan had small ventricular bleed (grade 1) and PDA which got corrected by itself. Our little miracle came off the ventilator in just one month and CPAP in another 3 weeks. After 3 months (still one month before my due date) he was completely off oxygen. He developed ROP and needed 3 laser operations but luckily the last one was successful and his vision is fine now.

The neonatal journey is the most difficult journey for parents and babies. You are constantly on the edge of a cliff. It’s not easy to see your child going through so much pain and struggle. You are constantly worried about on and off desaturations, out of range blood pressure, the struggle finding a vein every day, hundreds heel pricks for blood gas, upset tummy, many blood transfusions, weekly eye tests and many more….We hear that beeping monitor alarm sound in our dreams even now. Your eyes are constantly on those colourful numbers on the monitor and praying it will not beep.

We are extremely happy to say that Nivan came home around my due date without any support or complications, like a normal full-term baby. This was the best gift ever from the neonatal unit, First Touch and everyone involved in Nivan’s care. This was not possible without the neonatal nurses and doctors’ hard work and dedication. Nivan got motherly care from the unit which we can never pay back and we can never fully express our gratitude in words. First Touch does great work in making parents’ lives so much easier during our babies’ neonatal stay by looking after every single need of parents from expressing milk to mum’s food and comfort.

Three years on, Nivan is a cheeky, cheerful boy. He does swimming, plays tennis, dance and many more activities with great interest. He is called ‘Chatter Box’ in nursery and he speaks two languages fluently. We feel the proudest parents for his progress. Everyday, we thank god, the neonatal unit staff and First Touch for giving us this most wonderful gift!

Jetun and Rita Patel