World Prematurity Day 2015 - Sukai's story

Sukai's Story Hero
I am thankful for my family and friends, who gave us strength and support when we needed it.

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.

Today he is a normal one year old who has met all his developmental milestones for his corrected age (eight months). He is the happiest baby ever and he is my life. He brings so much joy, not only to his dad and I, but also to all his cousins, aunts and uncles.

Every day I thank God for making the decision to give my precious baby a chance, and for all the beautiful nurses and doctors. Above all this, I am thankful for my family and friends, who gave us strength and support when we needed it.

I decided to write this article because one of the first things I did after I had Alieu was search the internet for success stories about premature babies. There weren’t a lot for 23 weekers, but the ones I found gave me so much hope that if Alieu's story could give hope to one person, then my goal has been achieved.

The most important lesson I learned during this journey is to take each day as it comes - enjoy the pleasant days and stay strong for the difficult ones. Find time to rest, talk to other people and once a while do something normal, not hospital related. Keep your support system close and always ask for help when you need it.

NICU nurses are trained to understand parents, so ask as many questions as you want and they will be happy to help. But most importantly, be involved in your baby’s care as much as you can. It might seem scary at first, but you will become an expert before you know it. Have as much skin to skin with your baby as you can, as it helps stabilise the baby and also improves milk production for breastfeeding.

If you are reading this and it's a down day for you and your baby, have faith; these little ones are stronger that we imagine. Say to yourself that it will be ok, as there are babies like Alieu who went through the worst and came out strong."

Millions of babies are born prematurely around the world like Alieu, but unfortunately not all of them survive as they are just too sick. If you would like to help us support these families and continue to look for improvements in care, you can support us by donating to our World Prematurity Day appeal.

If you, like Sukai, have given birth to a baby prematurely and need support, you can ring the Bliss helpline on 0808 801 0322.