Share your story
Do you have your own story to share? Please add your story to the gallery below - join our fight and help others see they are not alone.
My little boy
Story by: Hannah
My name is Hannah and my little boy is George, almost 5 months. So his due date was 28.10.18 and he was born 23.09.18, so 35 weeks gestation. My pregnancy was a pretty good one, I had the odd thing here and there as you do when you’re pregnant like the sickness and tiredness but overall I felt good. My blood pressure was okay and all my check ups we’re okay, but I became very swollen and felt that baby movements were very small even though I was coming to end of my pregnancy, so I bought it up in appointments but because everything else was okay, it was assumed nothing was wrong.
Then on a Monday I started to feel unwell, headache and my chest was sore, so I left it because I didn’t associate it at all with being pregnant (silly me!!). I had a midwife appointment on the Thursday where I was sent to hospital because my BP was through the roof, from there I was sent to triage and then finally admitted. On the Friday morning I was taken for a growth scan were I was told my baby was very small looking to be around 3lbs, on the Saturday it was confirmed I had pre-eclampsia. Sunday, to cut a long story short, all hell broke loose. I didn’t feel well at all and the only thing I can tell you was my head felt like it was going to explode! I was put on a monitor and baby was going into distress and the heart rate was dipping, so I was rushed to labour ward where I was told we have no time. Baby had to come out now, and I was rushed to surgery and put to sleep for an emergency c-section.
George was born weighing 2lbs13oz and was taken straight to NICU where he was on oxygen for a small amount of time and then eventually, moved his was up to SCBU where he needed to grow! I was very lucky, he only spent a total of 20 days there. I woke up in Intensive Care due to extremely high BP on the verge of a heart attack or stroke, and I learnt I am allergic to morphine so was put on oxygen. I didn’t meet my little boy for a full 30 hours after he was born. We were very lucky that we were in the right place at the right time as pre-eclampsia is a deadly disease of the placenta causing serious issues for mum and baby! It was expected that baby stopped growing at around 26-28 weeks but wasn’t detected until 35 weeks when he had to come out.
We are extremely lucky! I share my story because i think it’s important all expected mums know the signs of any dangers to them and their baby and to fight for a scan inbetween the 20 week one and birth! Whether you’re under consultancy care or midwifery care. My little boy is absolutely perfect and doing amazingly! A big shout out to Royal Gwent Hospital though, they really were fantastic from start to finish! Couldn’t have had better care!! Thank you!
Story by: Claire
Teddy was born 12 weeks early at 2lb 10oz. Due to his very traumatic birth, Teddy didn’t breath for 40minutes resulting in severe brain damage.
They didn’t expect him to survive his first night but he was determined to try and fight. Every single organ in his little body was absolutely perfect, apart from that one area of his brain telling him to breath for himself.
He was unable to breath without the ventilator and because of this he joined the angels at 15days old.
Baby Zachary born at 34+1 weeks
Story by: Lindsey
I had a bad bleed at 22 weeks. I had placenta previa. My cervix was completely covered by my placenta. I had bed rest for a few weeks and had no more bleeding.
At 34+1 weeks I had gone to order his crib when I felt uncomfortable down there when I went to the toilet my plug had gone. I called the hospital was told to go straight down with me been a high risk pregnancy. I was in a lot of pain in my back they monitored him. They sent me for a emergency scan when the doctor said we need to deliver your baby now.
I was in Labour if my cervix opened I would deliver the placenta first. I taken for a emergency c section. He wasn't breathing properly and was rushed to nicu. He was on CPAP but took a turn for the worse and was put on a life support machine he was on that for 3 days then on high flow.
He's now a beautiful 5 and half months and doing well. I will be forever grateful to all the staff at the hospital.
Story by: Kristina
Alfie was 12wks early, he was born 27wks5days at 12pm 19th Dec 2014. Everything was going grand with my pregnancy until we reached 20wks I started bleeding and getting tightenings, our hospital kept a really close eye on us as soon as the bleeding subsided I was aloud to go home on strict instructions bed rest and come back up weekly for check ups.
The night before Alfie was delivered I was feeling really unwell and getting some tightenings, by the time I got to the hospital my fingertips were white my lips blue then the shivering started, I got took from maternity assessment almost immediately to delivery suite where they tried to give me medication to bring down my heart rate and Alfie’s as his was over the 220 mark and tests lots of tests to see what was going on.There was a decision I was to be delivered as soon as it was safe for Alfie and me.
By morning we weren’t any better and given the steroids my waters started to leak and they were green. Alfie was breech so it had to be an emergency c-section, I was by myself as it was all a bit of a rush and my partner had our other children to watch. Alfie came out by the sunroof weighing only 2lb12oz, they had to put him in a special bag to keep him warm. Alfie was took to NICU (another world) and got the most amazing treatment, they put the ventilator on him and gave him another does of steroids along with his longline in for treatments he will need his fats and caffeine and his antibiotics.
As his mummy I did everything I could on the days he was unstable I would sing to him, the days he was good I would do ALL his cares and kangaroo cares anything I could possibly do I would. His journey was 5 months there were lots of wins, it did always feel like the losses were more. I had septicaemia and couldn’t visit him for two days, I was aloud to express still and did so, the hospital also provided a webcam so I could see his every single movement until I was well enough to be by his side.
He was in NICU for six weeks then got promoted to HDU which where we saw all his wee baby friends move on to Special Care, the bad days got less here and a little routines started we would try him with the bottle and baths and intergrated them into his days, his nana would wash and bag everything everyday we really felt we got to bond so much more with Alfie here. Alfie got a ph study test done to show he had reflux disease which we maintained with meds. Alfie had a sleep study done that showed he had Chronic lung Disease which they showed me how to maintain his flow and keep him on the oxygen therapy and an apnea monitor for coming home and take control.
Alfie would scream in agony which all the signs symptoms and tests led to milk intolerance to my milk which left him bleeding inside out which was terrifying Neocate special formula really helped with this but he never gained much weight and looked so fragile. Alfie did undergo an operation for his groin Hernia he did have another one in his belly button which went away itself.His eyes were great and his hearing too so that was something .He was very very ill but we had amazing support from our hospital and they really helped us look after Alfie, the community nurse Julie came out every week and monitored our darlings progress and we would visit the hospital monthly for our development appointments and to see his dr then it became three monthly then yearly.
We slowly but surely weaned him off everything when he was ready and .....when Alfie reached the age of two he was a picture of health, he got discharged from the hospital and development team it was a very emotional day he is our miracle . As his mummy my theory is Alfie just needed a little more time with his lungs his gut everything really .
Story by: Amanda
Emily was born too soon but fought hard and is now a happy healthy 12 year old.
She was born at 25+2 weeks weighing in at 690 grams. We spent 84 days in nicu. The wonderful staff there (altnagelvin hospital), helped our girl get strong and grow. Without them we wouldn't have our happy story today.
Leo and Tyler identical twins born at 25 weeks 3 days
Story by: Caroline
Leo and Tyler where our long awaited baby boys on the 29th december 2017 we learnt that we were having identical twins. But at 25 weeks 3 days they entered the world due to twin to twin transfusion my darling Leo came silently in to the world, he was so small but so perfect. Tyler was brought back to life and rushed to NICU where the fight began.
Mummy and daddy were told that he probably wouldn’t make it through the night, but he proved them all so wrong we wasn’t going without a fight. On the 10th May we were told by the consultant that the left hand side of Tyler’s brain was flooded with blood, as well as this the blood was toxic due to the twin to twin transfusion. This in turn suggested he would have some form of disability. We were not phased and were adament that aslong as he was fighting we would fight with him.
On Sunday the 13th May we were told that Tyler wasn’t urinating or producing enough urine and that he couldn’t survive if this maintained. We had to make a decision to either get an abdominal catheter fitted or let nature take its course. We decided to get the procedure done knowing there was a significant risk that he may not survive the procedure. Thankfully the procedure went well and for the coming days Tyler went from strength to strength, but sadly on the 25th May Tyler started to become poorly again and on the 26th May we got the phone call to come to the hospital.
Tyler had taken a huge turn for the worse, he had no blood pressure and his ventilator was up at 100% and they also thought that he may of had another bleed to his brain. We had to make the hardest decision to allow him to go peaceful in our arms.
My sons are now reunited together, I miss them so much.
Story by: Lucy
I went in to spontaneous pre term labour at 30+1 weeks and delivered our baby boy Luka. He arrived breathing and all in all healthy but after a few days contracted NEC (necrotising enterocolitis) and eventually had to have surgery and a stoma formed then a second surgery to reverse. The NICU journey was a journey through hell but we are lucky enough to have our baby home and healthy now. I really want to help in donating for vital research to be conducted as prematurity and the complications because of it is devastating to so many families.
Story by: Michelle
This is my story about my 4th baby Freddie, he was born at 31 weeks & 4 days. My waters ruptured 6 days prior to Freddie’s birth & in that time myself and Freddie got Sepsis due to Group B strep. I had a scan two days before Freddie was born & found some damage to his brain he was born by Emergency cesarean section under general anaesthetic where he fought so hard for his little life, after a pneumothorax in his left lung, several infections & bleeding on his brain he spent a month in special care & now continues his journey under the neonatal team awaiting to see neurosurgeons & the physiotherapists team. Just hoping for no permanent brain damage.
Story by: Lisa
At 24+3, Jorge was delivered by emergency c section due to severe preeclampsia and hellp syndrome.
My boy thrived for the first 3 weeks then first lung infection hit, but he pulled through. 2nd one we knew we had problems as one lung did its job the other hadnt. At 37 days old, my boys heart rate dropped i ran up to him as fast as i could. I held him and smelled him,I told him i loved him that it wasnt his time and that i needed him like he needed me, then his sparkle left, my boy had gone. Its been 16 months, i miss him each day xx
4 1/2 months early
Story by: Sophie
I was born 4 1/2 months early and was very ill in hospital only just weighing a bag of sugar. Spent a long time in hospital when I was born and was christened at birth as I wasn’t expected to live. Thankfully I am now nearly 30 and have been relatively healthy apart from a few health conditions, which is expected after being so early.
Thanx to research many more baby’s are surviving these days I was one of the lucky ones and my thoughts are always with the families who aren't so fortunate in these situations
Story by: Laura
At 28 weeks pregnant I woke up from a disruptive sleep, it was 3 a.m and my stomach was hurting, I went to the toilet with an upset stomach and came out feeling better so went back to sleep putting the cramps around my stomach down to not being well. I woke up at 9 o clock and couldn’t get up by myself, so I messaged my partner to come and give me a hand, I told him something wasn’t right but I was unsure what was happening, I was a first time Mum.
As the day progressed the pains did too and I hadn’t felt baby move for a while, I was in bed and rang up the maternity unit who told me to drink cold water lie on my side for an hour and ring back to let them know how many times she had moved, she only moved twice so I rang back to tell them to which they said I needed to be checked over. The drive to the hospital was agony, every speed bump hurt.
I was left on a machine to monitor any contractions and the doctors couldn’t find anything wrong. Eventually they decided to do an internal examination and found out I was 3cm dilated. I was then told I would have to be moved to another hospital more suitable caring for my babies needs if she were to arrive, so I went in an ambulance to the new hospital. I was terrified, I was only 19, I’m supposed to be fit and healthy things like this surely couldn’t happen to me but they did. I was given steroid injections to help mature her lungs & a course of tablets that helped to slow down the labour and put off my contractions but they kept returning and sure enough the day arrived where they couldn’t give me any more tablets, nature would have to take its course.
So on day 4 of my hospital stay I gave birth to a 3lbs 2ozs little girl, she was a lot healthier than expected and weighed a good amount for her gestation. We stayed in the hospital for a little under 6 weeks, it was the scariest experience of my life some days she would do so well and then the next day we would take 5 steps backwards. She pulled through and I took her home when she weighed 4lbs 4ozs, today she is 4 and you would never be able to tell the start of her life was the fight of her life. She amazes me and I’m so blessed and lucky to have such a wonderful little girl.
What they can do for premature babies is amazing, what they could do with a lot more funding and research would be mind boggling, forever grateful to the staff at both the hospitals who took such good care of us.
My baby Ben
Story by: Charly
My story unfortunately does not involve NICU as Ben was born at exactly 21 weeks.
There was no attempt made to help him in any way even though I knew it was futile to even try I still would have nightmares about no one coming to help. I went into labour naturally after just popping into triage as I’d had a temp, felt run down and felt pressure down below.
Turns out I’d contracted chorioamnionitis (a severe infection of the membranes surrounding the baby) which led to sepsis. This could have been avoided if my cervix had at any time been measured as we later learned the cervix opened early allowing (normally harmless) bacteria to ascend and cause devestation.
Ben was so strong and lived for nearly half an hour all by himself. He moved and cried. I wish help can one day be available for babies like Ben who show such promise but are not considered “viable”. I am now pregnant with a double rainbow (twin boys) but I think of my Ben every day.
IUGR success story
Story by: Linda
My daughter was only 5lb 2oz (2.2kg) at full term due to intrauterine growth restriction from 20 weeks, so when I was expecting my second child I was monitored closely. This baby's growth also slowed from 20 weeks and after the consultant became concerned about the blood flow, the decision was made to induce me at 35 weeks. A paediatric team was on standby and cot was reserved in the NICU, but despite being only 3lb 13oz (1.7kg) my baby boy came out kicking and screaming!
We went to the postnatal ward initially but after 20 hours he ended up on HDU with jaundice. The memory of walking into a room full of strange beeping and whirring noises and seeing my previously stable baby now covered with a mask and tubes will never leave me. Thankfully, his jaundice resolved swiftly and he moved to SCBU for a few days then back to the ward before coming home at 9 days old and his birth weight! He's now almost 3 and still small for his age but is feisty, cheeky, loving and has bags of energy - he's my little superstar!
Having a premature baby is a rollercoaster, even when your baby is comparatively well and only a few weeks early. You never appreciate how fragile life is and what amazing things the human body and medical science can do before you visit a neonatal unit and I will always be thankful for the skill and care of the staff there.
My little miracle Aria
Story by: Sarah
Meet Aria, she’s currently 15 weeks old. The worst day of my life was when I was told my placenta wasn’t working! I had to go for weekly check ups and growth scans but she just wasn’t growing! They rushed me down for an emergency section at 35 weeks and my little girl was born weighing 3ib 13oz.
Aria didn’t need any help with her breathing, nor did she go jaundice. She didn’t need a blood transfusion either. She was kept in for 1 week and released at 4ibs. She has gained weight every week and now smiles and giggles and is the most happiest and content baby ever . She is still tiny and like a little doll but she is a fighter.
For those out there suffering similar to me I want you to know there is hope, they are fighters! The NICU teams are brilliant and with all the help and support they can pull through. I never knew something so small and dainty could be so strong!
Story by: Keisha
Amaziah was born on Sep. 9, 2018 at just 24 weeks and 5 days. We weren't expecting him to arrive until Christmas day. He weighed in at just 1lb 8oz.
The doctors told us that Amaziah wasn't going to make it through the night, but he did. Over the course of the next week, Amaziah developed brain bleeds on both sides of his brain and was reliant on oxygen. He had infections and was given antibiotics to help fight them off, his sugar was also high which they had given him insulin for.
On the 7th day, Amaziah developed a perforated bowel, unfortunately with all the other issues that was going on with his little body, the stress was all too much for him and he passed away in my arms on September 16, 2018.
Story by: Steph
My pregnancy had been completely low risk until I suddenly experienced severe bleeding at 27 weeks. I was admitted to hospital and all hell broke loose. There were consultants, nurses, scans and examinations. It was all such a shock.
I’d developed HELLP syndrome, a life-threatening complication. The doctors said that I had to deliver my baby as soon as possible. I was in complete denial as I still had 3 months until my due date.
Our baby girl, Freya, was born weighing just 2lb 4oz. She was so small and fragile. She was the size of my hand, a little dot. But she was gorgeous. Freya’s first weeks were a rollercoaster. There were some terrifying set backs but she fought back and 9 weeks later she finally came home.
We have been really, really lucky. Many of the women I met in hospital had gone into labour too soon and nobody could say why. We know so little about it and, as mums, we have a huge sense of guilt. It's so important to raise awareness of prematurity as it happens to so many people.
I was born at 27 weeks.
Story by: Amanda
I was born at 27 week's weighing just 2lb, the nurses nicknamed me "Little bag of sugar". I was in hospital for quite some time. I was even christened in there as they didn't think I would be coming home. . . Growing up I had a few health issues due to my size but I'm now a healthy 40 year old Mummy to a 6 year old Daughter.
Story by: Charlotte
I had a normal pregnancy up too about 26 weeks when they found out that my after birth had come apart and was killing my baby. Alfie was born at 28weeks at just 1lb 9oz, and he was really poorly.
He had problems with bowl, he had an operation to save his life had to go on oxygen to help him breath as his lung collapsed. He also had 4 blood transfusions to help him. He was let home after 4 mouths after he had one more op on his bowl.
He is now 5 months and only weighs 7lb 9oz and is still on premiere milk to help him, he also has lots of med to help his growth. He's so lucky to be here. Alfie has got a long road ahead of him but he fighting everyday.
My little shining stars
Story by: Shayna
This actually breaks my heart to see all these baby's and their family's going through what should be a happy time but unfortunately ends up been an emotional roller-coaster. So glad that most these little miracles are still here to share there amazing stories.
Unfortunately for me my two little miracles never had a chance at life, I was only 17 when I had my twins Lee and Liam, they would be 13 now. I was 28 wks and 4 days when my boys were born Lee weighed 1pound 2oz and Liam weighed 1pound 4oz. Lee passed away at only a day old and Liam passed away at 8 days old. Liam fought so many battles he ended up getting (nec) and that was way to much for his little body to fight off even after his operation.
I've never shared my story or pictures of Lee and Liam on any social media site but when I saw this site it just seemed the right thing to do I'm still not ready to share my pictures but am more than happy to share my story.
My twins delivered at 33weeks +5days
Story by: Ameni
My story is a bit funny. At the beginning of my pregnancy I had a heavy bleed and thought that I had miscarried, then after three weeks from the bleed I was having pregnancy symptoms so I went for a private scan and found out that I was expecting twins :) It was a shock for both me and my husband.
Everything was good till week 24 when the scan showed a bad doppler for my boy - he had a growth restriction.
I was having 2 scans per week and then at 31 weeks I was admitted in the hospital for 2 weeks and my baby boy' heart started dropping so I had a C section at 33+5 .
My boy was 1.4 Kg and my girl was 2Kg. My girl needed breathing assistance but the boy was fine just very tiny. They stayed in NICU for 5 weeks and now they're 4 months old :)
Both of my babies
Story by: Roisin
Both my babies were premature my daughter was exactly 8 weeks early (now 2) and my son was exactly 6 weeks early (now 8months) and both had a few bleeds on their brain as well as jaundice so both had to spend a few weeks in NICU.
But when my son come home he was only home for about 3 weeks then he was rushed to Alder Hey children's hospital because he had bronchitis and needed to be on a ventilator (he spent 5 days on that) and in total he was there for 17 days. I dread to think what would've happened if we didn't have the NHS
My Little Miracle
Story by: Jess
Tuesday 20th October 2015 was just another normal day. Little did I know that I was going to end up in hospital, only to be told that I was having my daughter that day. It was such a scary time and all sorts were going through my mind. I later gave birth to my beautiful baby girl weighing 3lb 4. She was taken off to NICU and spent the next 3 months in there being looked after by some fantastic doctors/nurses.
Although it felt like a lifetime and it was a constant 1 step forward, 2 steps back, I knew my little girl was a fighter and 1 day, I’d be bringing her home. I will always be forever thankful to all that helped her and to those who donate blood as my daughter was one that was in need of a blood transfusion.
Almost 3 years on and those memories will stay with me forever. But miracles do happen. My daughter was discharged from her consultant in February 2018. She is doing extremely well and has me and the rest of her family in fits of laughter.
For all those family’s going through the same situation I have been in myself, think positive and stay strong. There are some amazing people out there that do amazing things. Without them, things could have turned out very different.
My 23 weeker
Story by: Chelsea
I gave birth to my son at 23 weeks & 2 days weighing just 555grams on 21/05/2017.
Jacob is such a fighter, he had numerous infections, he had a heart operation at 10 weeks old only 3lb. He was ventilated for 3 months, on cpap, high flow and low flow. He came home after spending 5 months in hospital on oxygen. Jacob was only on oxygen at home for 3 months.
He's doing amazing now, he can hear and see. He's got a good set of lungs, he's a cheeky happy little boy and we are ready to spend his first birthday together on Monday.
The words and photos in this gallery posts are written by people who have shared them and reflect their own personal story.