This World Prematurity Day, mum Sukai tells us her incredible story of premature birth and how she coped with the feelings of guilt and helplessness:
"The plan was simple: get pregnant and nine months later be delivered of a bouncing baby boy or girl, like everyone else. No plan B, no other options. That's how it's meant to be, that's the norm. But my journey was different.
The early weeks of my pregnancy were relatively very easy, a bit of nausea and fatigue. All my tests were ok, my baby was growing normally and I had the thumbs up for everything.
Three days after I found out I was having a boy, everything changed. My worst nightmare happened. I woke up to an unfamiliar kind of pain. It became so strong I could barely stand, so I took some painkillers and tried to go back to sleep. Shortly after that the pain became unbearable, so I went to the toilet and could feel my membranes bulging. Then and there I knew something was wrong and I experienced all sorts of different emotions. Was I losing my baby boy? At just 23 weeks there wasn’t a chance he could make it.
I wondered: why? How could it happen? What went wrong? What did I do?
A trip to hospital confirmed my fears. I was already six centimetres dilated and there was nothing the doctors could do. I had to have him. He was ready to come out.
Every cell in my body wanted to keep him in, at least for a few more weeks, to give him a chance to survive, a chance to live a normal and healthy life.
The doctor walked in to the room and talked about all the complications and risks, but all I could remember was the decision he gave me and my partner to make. Should they let our baby live for as long as he could without any support, or give them the chance to revive and ventilate him.
The doctor was inclined toward the first option, as the survival rate for premature babies this small is 17 per cent, while 80 per cent of babies who survive live with disabilities that might make them dependent on others for the rest of their lives.
My husband told him to do everything he could to save our boy. We didn’t know it at the time, but that was the best decision he ever made. It was the beginning of a journey I never could have imagined.
At 5.21pm on 2 August 2014 my precious baby boy was born, weighing just 570g. He made the tiniest cry I have ever heard. The room was filled with doctors and nurses, who quickly rushed my son away without a kiss or a cuddle from mummy - I only caught a glimpse of him. I was no longer pregnant, but I didn't feel like a mum. I had nothing to show for it. I was sad, but a part of me was also disappointed in myself. Being a woman I believed it was my job to carry the baby to term and make delivery day the most memorable day for my husband and I.
The look on his face broke my heart - he tried so hard to be strong for us but I could see his hurt, I could see the confusion, the disappointment and the helplessness.
Six hours after giving birth, I was wheeled in to NICU to see our son. He was the tiniest in the ward, his skin was so thin I could see his blood vessels. His tiny eyes were shut, and he had hair all over his body. All I wanted was to hold him, care for him, be a mother. Every fibre of my being wanted to make things better but I couldn't. The feeling of helplessness was unbearable.
He had every kind of machine hooked to him - there were constant beeps and sounds. The nurses at the hospital were amazing. They took their time to answer every question I asked, no matter how silly some of them were.
The doctors were very kind too, but told me what the worst case scenarios were. I understood that it was their job, but I hated hearing the statistics. One of them told me to “give it a week and see how it goes”. I kept that in mind.
Seven days later, my boy was still strong, fighting for his life every day. We named him Alieu, after his grandfather.
Every morning I would go to the ward and see him, but every evening when I had to leave, I felt so helpless. Leaving him at the hospital every night was the hardest thing I had to do. I would ask myself, what kind of a mother leaves her tiny baby with total strangers? Would he still be there tomorrow?
I soon began to know what every machine was for, what every beep meant. I began to get to know my son. What blood gases were, what his mannerisms were. I could tell if he was well or not.
I began to make friends with the other mums. They were the only people who could understand what I was going through. We would all sit around in the expressing room and discuss. What complications our babies were each going through, and we would lift each other up. We created a sort of informal support group and the mothers with the older babies would give us hope.
Alieu’s journey in NICU was rough. He had an open valve in his heart, a perforated bowel, various infections and chronic lung disease. He was ventilated for over three months, which caused a severe narrowing in his windpipe. He also suffered from Necrotising Enterocolitis, for which he needed surgery twice and a stoma.
He had surgery five times in total, 20 blood transfusions, and spent around 140 days in four different hospitals.
Alieu finally came home on Christmas Eve, without any oxygen. It was the best day of my life.
