“You are their advocate, and you are doing enough” - Natalia’s story

After two years of trying to conceive we always say our little boy Noah obviously couldn’t wait to meet us. He was born at just 24 weeks and one day at Lancashire Women and new-born Centre in Burnley in January 2020, weighing in at 775g (1lb 11oz). From there followed ten-and-a-half-month hospital stay for us - much longer than we had ever anticipated.

Noah’s main diagnosis is his chronic lung disease like so many premature babies, but from day one we were told that Noah had some of the worst lungs that the medical staff had seen. At just two weeks old, he developed an infection and was fighting for his life. I sat and watched them work on Noah all day, trying things that they usually only use on babies six months old as it was last resort territory and there were many times after that we thought Noah would never make it home.

Despite the many side effects we were told about the steroids, he needed them to help get him extubated. He had several rounds but was still struggling alongside having a hernia and ROP (retinopathy of prematurity). He was too poorly to be transferred for surgery, so we had no option but to wait and see if his conditions improved.

One night however, we got a call to say that he had taken a turn for the worst and there was no option but to transfer him to St. Mary’s Hospital in Manchester for emergency surgery. Each surgery carried risks and the surgeon operating told us she was more concerned about his respiratory status than the hernia repair. The surgery was successful; however, we were already discussing further surgery to give him a tracheostomy. This would allow him the option to come home rather than spending months in hospital sedated.

We were transferred to Leeds Children’s Hospital, which was more local to us but still an hour’s drive away. I was provided accommodation by The Sick Children Trust at Eckersley House, allowing me to be closer to Noah. There, Noah had laser eye surgery, his tracheostomy and also a gastrostomy to help with his feeds.

Having a premature or poorly baby on the neonatal unit raises your anxiety like nothing else. You are thrown into a world of new terminology and before long, I knew all the medical terms. I would spend all day on the unit by his incubator and cot side and yet it would never feel like enough. I hated leaving him and at home you worry that if the phone rings, it brings bad news, like it did on a few occasions for us.

In the beginning, I was so worried that Noah would not know my voice because he was looked after by so many nurses. I would sit by his incubator and read to him every day and talk to him about all the things we would do and places we would take him when he came home. Alongside the cuddles, it was the only way I could bond with him.

The neonatal nurses got us involved in his cares such as his feeds - for Noah this was through an NG tube. Changing his nappy was usually a challenge when done through an incubator, being very careful of all the wires and precarious cannulas. Nothing prepares you for seeing your little baby being pricked time and time again. At times I became numb to it as it happened so often, but it still causes Noah and myself trauma when it comes to blood tests and immunisations.

Being on the NICU we found it difficult to see other babies moving from room to room, as they got better and closer to home. Noah stayed in Room One the whole time in Burnley – for babies who needed the most critical care. We got to know and trust a lot of the nurses and consultants to whom we are forever grateful for giving Noah the best chance.

On the neonatal units, there was a lot of material from Bliss, and I found it useful researching the issues premature babies can suffer from on Bliss’ website to educate myself. A lot of hospitals do have a Bliss Champion which I would have found useful, but Burnley unfortunately didn’t have one. Being a Bliss Champion is something I would like to consider doing myself in the future to help other families.

Noah spent ten and half months before finally coming home on 30 November 2020. My hope was for him to come home for Christmas and our wish came true.

2020 was certainly a crazy year for all that many wish to forget but it was Noah’s year. Being born in a pandemic, with limited visitors, full PPE and masks, Noah’s development has suffered.

He came home on six litres of oxygen which meant going out even to the hospital for appointments we would have to take many oxygen cylinders. Seven months later and to this day he requires no oxygen. He does still rely on his ventilator but is having periods off with the aim in the future to be free of the vent and in the future free of his tracheostomy. This, like anything with these children, will come at his time and when he is ready. He’s the happiest little boy and loves being home with us and our two little house rabbits.

We always advocate for prematurity and seeing so many hopeful stories like the ones that Bliss share on their website and social media channels is always an inspiration to others. We hope that our story too brings hope to other families in similar situations.

My advice to other parents is know that you are not alone. There is a lot of help out there and do not be afraid to speak up and ask for help and ask questions about your child’s diagnosis. You are their advocate, and you are doing enough. Get rest when you can. Your little ones are so resilient and will give you the strength you need.

Natalia, Simon & Noah x