Sonja Bigg: 'My daughter was born early and chronically sick but my family are unbreakable thanks to our special little girl'

The premature birth of Sonja Bigg's daughter Nessie almost brought her family to breaking point. But four years later, they've changed in ways that they never expected

Life changed out of all recognition on 13 April 2005. I woke up at 2.13am drenched, panicking, my heart beating wildly. My waters had broken. And I was only 28 weeks pregnant.

After two days of waiting, my daughter was born in minutes. Alone and terrified, I watched as they tried to revive her. My husband, Jules, arrived as she was intubated and rushed into intensive care.

Our new daughter, Nessie, was gravely ill. The doctors were doing their best and they told us to go home and wait for news. I had given birth less than two hours previously and yet here I was, walking fully dressed along a hospital corridor with no baby. I didn't cry. I held it all back, knowing that if I let go, I would not be able to stop.

We had been in bed for an hour when the call came. It was time to go and say goodbye to our daughter. It was bucketing with rain and the car was full of the sound of crying; not my own, but that of my husband. I was still too shocked to cry.

We were taken into a side room. Doctors told us that there had been an infinitely small improvement since the call, that Ness was fighting for her life on maximum support. There was no leeway for deterioration as there was nothing that could be done over and above what was being done already. It was just a question of waiting.

Two days later, I cycled back into work, to the horror of my colleagues. As the adult therapy manager of a south London primary care trust, my brain had gone into autopilot; an overdrive of planning for the future. If Nessie survived, she would need me at home. If I had started maternity leave the moment she was born, it was likely to be over when she came home. If she died, I would need to take the leave in order to grieve. Also I had three other children to provide for. My boss allowed me to defer my leave until it was most needed. Jules moved his design business into our sitting room.

On week three came another blow. Nessie suffered a severe brain haemorrhage. She was unlikely to survive. And if she did, the severity of the bleed meant there was every possibility that she would be severely disabled. That afternoon I went to sit in the park opposite the hospital. I cried at the top of my voice, unable to control it, however many people passed by. I cried for hours and didn't care who saw. And then I stopped. Nessie needed me.

During the week, I would get up, go to the hospital to sit with Ness, go back home, get my kids up for school, go to work. Lunchtimes were spent in intensive care. Then back to work before sitting in intensive care as soon as work finished. Then back home to see my other kids, help with homework, supper, bedtime before returning once more to sit with Nessie until midnight.

For six months I watched helplessly as Nessie fought for life on a daily basis. And then Nessie came home. That was when the enormity of the situation finally hit us. Nessie was on constant piped oxygen and a regime of two-hourly drugs and two-hourly chest physio, 24 hours a day. There was no help, no respite and no sleep. She began to vomit after every feed and got progressively thinner until a feeding tube was put in. Feeds were hourly with a syringe day and night as it was the only way we could get her to keep them down. Leaving the house was impossible as Nessie was too ill. I became a prisoner in the basement of my house, leaving it only to go to bed at night.

Nessie slept next to our bed with an apnoea monitor so if she stopped breathing we knew immediately, and a monitor so that every time her oxygen saturation dropped to dangerous levels we could get her upright and turn up the oxygen until she was out of danger.

My older children had a crash course in things that most children never have to experience. They learnt to help pin her down so I could replace the feeding tube she ripped out several times a day and to hold her head forwards while I was doing it, so the tube didn't go into her lungs. They learnt to watch over her like a hawk and observe her skin colour, so I could go to the toilet without worrying that she was going blue. And they learnt to give nebulisers, hold syringe feeds and to put up with a mother who was so tired that she often didn't hear them speaking to her.

Ness spent all day fighting to breathe. She didn't have the ability or energy to do anything else. Even eye contact was too much for her to cope with and was something that she avoided at all cost. Any movement would make her so short of breath that she lost oxygen saturation and went blue. She retreated into her own little world where no one was hurting her, no one putting masks over her face, forcing tubes down her nose, bashing her chest to help her chest infections. She wanted to block us all out.

But the one thing that Ness could not fail to respond to was slapstick comedy. With my children in front of her, pulling faces and smacking each other in a Tom and Jerry manner before falling to the floor, Nessie's attention would be held. She would silently laugh until she was puce. She learned to clap. And she learned to smile. She began to form a gigantic humour and a gigantic personality from the confines of her special chair – and to follow their faces with her eyes as they moved around the room, silently begging them for more fun. They forced her to fall in love with them, just as they were in love with her.

With that love came the utter devastation each time Nessie became ill. She had countless pneumonias and would rapidly go downhill. Waiting for doctors and new sets of antibiotics became a way of life; waiting to see if the antibiotics would kick in or to see if we were to be admitted into hospital again. And waiting to see, each time, if she would pull through.

After a year, I finally had to give up my beloved 20-year career that I had worked so hard for. There was no way I could have left her with anyone in order to go back to work. There simply is not that kind of provision for chronically-ill children. Having handed in my resignation, I felt lost in some way. I was no longer seeing friends, going anywhere or having a life. And now my career was over.

I had also been hit with the diagnosis of my own mother's cancer. Tragically, she only managed to meet Ness three times. Ness was far too ill to travel to visit mum in Northampton. And Mum was too ill to visit us.

Once when she managed it, she looked so frail and was trying so hard to be brave and hopeful that it broke my heart. Mum and I spent the few months that she survived lying to each other on the phone. I would tell her that everything was fine and that Ness was doing well. Mum would tell me that she was fine and was improving. Nobody was doing a good job of their deception. Mum died in my father's arms.

Shortly after that came another crisis point. Jules was away for the day and so were my children. The new antibiotics were not working and Ness was panting and limp in my arms. She was deteriorating in front of my eyes. On my own I watched her begin to die once more. I called an ambulance and waited.

And as I did, the tears I had been holding back for so long began to escape. I paced round and round in the kitchen with the sound of my own screaming resonating around the room. I was screaming at the top of my voice. I began to think if she died everyone else would all be better off without me. The combination of sadness, guilt and the crushing weight of the responsibility of keeping Ness alive had finally got me to my breaking point.

Yet again, Ness pulled through. And I looked back in horror at the place my head was at those few days before and realised, for the sake of my sanity, that I would have to start to do something constructive with my brain so I didn't go mad.

So I started to write a book. The book has grown with Ness. It has developed as she has developed the ability to crawl and walk against all the odds. It has changed as she has been diagnosed with profound deafness, cerebral palsy and possible autism. It has been reworked since I nearly met my own death in hospital last year, due to a burst abscess on my ovaries.

The challenge of getting it published has fallen at the same time as the challenge of me fighting to get Ness into a school for the deaf and to get her cochlear implants. It has given me something to distract my brain. And yet the book is not about Ness – its fiction. It's about a woman whose life disintegrates after her son is wrongly convicted of murder.

Not long ago, I watched as my children pulled Nessie out of the seat from where she was watching their sports day. It was the finale of their afternoon – the toddlers' race for the pre-school siblings who had come to watch.

My kids had been at their new school for only a few weeks following our move from London to Ramsgate. It was a move that dislocated them from their old friends and their old life, a move they hadn't wanted, but one they had approached with acceptance and determination, knowing that Nessie's lungs could not cope with London pollution.

Nessie's feeding tube dangled from her nose. Her legs buckled under her as they took her by the arms, hands instinctively under her armpits to support her safely without hurting her. I watched as all the other toddlers made it to the finishing line and all eyes fell on my children. People stared. Some of their new friends tittered. But my children continued, proudly.

Nessie was still a few feet from the starting line, her weak legs giving way under her every few steps as she was hauled along. She was laughing like a drain as she repeatedly fell. My children were laughing as they repeatedly pulled her to her feet and carried on. They didn't give up until she had reached the finishing line and then they started to clap and cheer as she crawled across it. The other parents began to clap and cheer with them.

It was one of the proudest moments of my life.

That is what Nessie has given us as a family. We are unbreakable. She has given me the guts to conquer my own fears and embrace a new career as a copywriter and an author. She has also managed to improve my husband's golf.

Nessie will never hear. She will never speak. She will always walk like a drunkard. Our next battle is to start to teach her to fight on her own. We will do everything we can to give her the courage to carry on being the funny, determined, sweet-natured and fierce little warrior she has become.

Sonja Bigg's novel is 'Of Vicars and Tarts', published by Pegasus Elliot MacKenzie, £10.99. It is available from Amazon.co.uk

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