Share your story
Have you had experience of a premature birth? Share your story below to our gallery and help others see they are not alone.
Around 55,000 babies are born prematurely each year in the UK.
Like you, each of those families has their own story to tell. Happy or sad, every story deserves to be told.
My karl
My karl
I’d been in hospital for few weeks in slow labour I was let out on Friday 22 oct 1988. By Friday evening I was in hospital as my front waters had gone. I was in full labour all I remember was the midwife saying to me, "I hope this is the stronger sex for your sake". One push he was out, he let out loud scream and was then rushed off to SCBU premature baby ward, he weighed just 2.17 ounces.
Karl's lungs had collapsed on both sides and the worst thing was getting him christened, as I knew then he wasn’t going to make it. I was in my ward when Mike my husband came belting in my room "come on Julie we only have minutes with Karl", we rushed to the SCBU and they put him in my arms and I watch the heart monitor fade off. He’d gone, my baby Karl had passed away. They took me and my husband to a room nurse came in carrying white Moses basket with Karl inside we spent hour cradling him both sobbing uncontrollably. Then the hard part came, leaving the hospital empty handed . My heart had been ripped out.
We finally buried Karl 31st October, a day I’ll never ever forget. A beautiful tiny white coffin. Every year on 22nd October I remember his birth like it was yesterday. I love you my baby boy I’ll never ever forget you. My Karl, my tiny baby boy.
My butterfly baby
My butterfly baby
On the 24th July my wife gave birth to our 6th baby, born at 31weeks, but soon after we were given the news that he had what looked like Epidermolysis Bullosa. This is a life limiting skin condition.
After further tests were done we were told out little boy has Epidermolysis bullosa with pyloric atresia. (only 1 in 50k babies are born like this and he was only 1 of 500k babies in the world with this condition). This meant as well as having skin as delicate as butterflies wings he also had a blockage between his stomach and intestines which needed an operation to put right. But due to his skin condition this was an op that the hospital wouldn't do as no other babies has survived the surgery or passed not long after the op.
We spent 11 days with our boy before we could even hold him. After 12 days he was taken off his breathing tube and we were able to hold and cuddle him properly. They were not sure if Uzziah would even breathe after the tube was removed, but he did us proud as managed over 40hrs off the tube. At 9.36pm on the 7th August he was called and left us. The saving grace meant he was no longer in pain or hurting. The 14 days we had with him we cherished every moment of them with him.
Baby James
Baby James
I had already given birth to a baby girl who was three weeks premature she was fine. In 1979 I was pregnant again and noticed the baby wasn’t moving about the same as Ruth had. At six weeks before my birth time I went into Labour. The staff at the hospital tried to stop the birth but unfortunately my waters broke and James was born by forceps delivery. He was very floppy and didn’t really cry he was rushed away into an incubator. He died four short hours later breaking our hearts.
We saw him briefly in the chapel. Different times I don’t bet to hold him again or spend time to grieve. He is never out of our thoughts. Unfortunately I don’t have a photograph of him.
My little girl was 12 week early
My little girl was 12 week early
My little girl Layla-grace was 12 weeks early due to me having ligement separation. They had to do a emergency c-section, I was so scared but she was born at 2lb 13oz and just 13lnches. We were in NICU for 75 days but now she is 2 and half years old and doing amazing with no health concerns.
She couldn't wait to meet us!
She couldn't wait to meet us!
Me and Ruby's dad were on a little holiday in Wales, at this point I was 27 weeks + 2 days. I'd been in the sea, lying in the sand and just had a brilliant time. I'd noticed my back was niggling, but didn't think anything of it. But as the day went on it got worse. We got back to the caravan and I decided to lie down, but I started experiencing pain in my tummy, after being stubborn and thinking I'd just over exerted myself, we decided we should get some advice on what to do. We were told to go to hospital and get myself checked over, so off we went all the while the pain is increasing.
Anyway long story short, we got to the hospital just after 6pm and were seen and told that I was in labour and to far gone to stop it. I had Ruby at 7.48pm, she was born into a Tesco freezer bag to help keep her warm. She was 2lb 4oz born. I didn't get to see her as they were working on her and whisked her off to the NICU. We saw her briefly before we all settled for the night. The next morning we were told Ruby had suffered a bleed on the brain and needed to be transfered to the NICU at BWH. We got to Birmingham and was told Ruby had suffered severe brain damage and we were told that it was very likely that she would have some form of disability, that she might not walk etc.
From July to the August Ruby went between Bridgend hospital (where she was born) and Birmingham womens, Worcester and Hereford (home hospital). She was doing well and we were close to being able to take her home. Then one night she wouldn't settle, we were sent home to rest and come back in the morning, but we were called in the morning and told we had to get to the hospital as Ruby was extremely poorly. When we arrived we couldn't see Ruby for all the doctors around her bed. When we did she her she was so bloated all over and you could see her her veins, we were told she had necrotizing entercolitis and it was a matter of life and death. After hours and hours they had to make the decision to transfer her (even though she wasn't stable) to B'ham. She had a 5 police car escort and we were told that they couldn't guarantee that she would make the journey. We were so numb from hearing this. Off she went and we travelled up shortly after. She was operated on the next day and lost 40% of her small bowels... But she survived.
Ruby then spent the next 6 months in BCH. We had many more touch and go moments, but when we finally got told that she could come home, it was the most amazing feeling but also scary knowing we weren't going to have the security of the amazing hospital staff that took care of her. Ruby is now 11 years and has severe CP, Epilepsy, c.v.i, short bowel, completely gastrostomy fed and severe learning difficulties. We have had so many ups and downs over the years, but she's still here showing us what an absolute warrior she is. We are and always will be incredibly grateful to all those that work within the NHS and all those that helped to keep Ruby here with us. #NHSHEROS
My baby Ben
My baby Ben
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.
Born too soon, but okay now.
Born too soon, but okay now.
On 7th October 2016 (my son's 5th birthday), I had an AVM (Arturo Venous Malformation) rupture. I was 20 weeks pregnant at the time. The ambulance crew thought I had pre-eclampsia. I was blue lighted to hospital. They performed an MRI and realised it was an AVM, they also said that they couldn’t deal with me. So I was blue lighted to another hospital 1.5 hours away. They operated on my AVM, sitting up so I didn’t squash my baby. In hindsight it was really good because a pregnancy is not considered viable until 24 weeks. I was only 20 weeks pregnant. It was the first in 22 operations that I had on my head/brain. On 9th December I had a cardiac arrest. In ICU they had put a tracheostomy in situ. My tracheostomy fell out or I pulled it out in my unconscious stupor. I was officially dead for 6 minutes, whilst they bump-started my heart.
On 25th December (Christmas Day) the ICU Dr’s decided to deliver my daughter. We both had sepsis. Our temperatures were spiking and the Dr’s decided that they could treat us better separately. So our daughter Phoebe was delivered 9.5 weeks early by Emergency Caesarian Section. She spent 9 weeks in NICU. She finally came home and my mum-in-law moved in, to help my husband with our 5 year old son, and new daughter. I don’t remember meeting my daughter until she was about 3 months old.
I finally came out of hospital on 6th November 2017. In February 2019 my daughter had a huge haemangioma on her face. She had it removed at Great Ormand Street Hospital, they did such a marvellous job. She has a scar. But it is so much better than the massive haemangioma. At Leicester Royal Imfirmary they scanned Phoebe all over her body, because you can get haemangiomas on your internal organs. She didn’t have any more haemangiomas, but they did find that her left kidney operates at 85% and her right kidney operates at only 15%. She now has outpatient appointments at the Nephrology (kidney) Clinic.
She is 4 years old now. She’s due to start school in September. She’s an ordinary 4 year old girl now. Although she did have a difficult start in life. She was very small in the beginning, but now she’s caught up with her peers.
Noel James Russell
Noel James Russell
Noel was born at 28 weeks gestation, with Hyaline Membrane disease. This meant he couldn't breathe on his own because his lungs had no elasticity. He was on a ventilator for 10 weeks, and he nearly died many times! He finally did manage to breathe on his own and was discharged from hospital after 96 days in Intensive Care.
But every infection he got saw him admitted to hospital again for many years. As a result of needing 80% oxygen in his first few days, Noel suffered some brain damage, and so he was very late reaching all the normal childhood steps, such as sitting, walking, talking, chewing etc. He needed intensive speech therapy for many years.
Despite all the problems, Noel is now 41, and although he still has many medical problems (asthma, arthritis, and ME) his sheer determination has meant that we feel so blessed to have him as our son!
Our very early surprise fighter!
Our very early surprise fighter!
At 25 weeks I went into unexpected labour (I thought I had very bad trapped wind) after going to the hospital in agony. They thought I had a urine infection and after tests came back all clear they decided to do an internal. After a look of a very concerned face, I was told that they needed to get me to a delivery suite. Absolutely terrified, they rushed me down and told me they would do everything they could to try and save the baby, but the chances weren't good. They said they may be able to stall the labour. They gave me an injection and said they would check in an hour as they may be able to stitch me. However after an hour this baby decided now was the time to arrive.
With my partner and now my mum at my bedside and my very worried Dad waiting outside, a team of around 15 doctors, nurses and midwives were there waiting for the baby to arrive. They told me not to worry and that I wouldn't hear the baby when it arrived but they would do everything they could. After a final push, my baby arrived and we heard the tiniest cry ever, but it was a cry!! Weighing 1lb 14.4oz our beautiful baby boy was here. He was whisked away after being ventilated. A few hours later we were allowed to go and see him. He was perfect. He had many hurdles along the way in his NICU stay, he suffered with NEC twice resulting in 39cm of his bowel removed, he got sepsis making him hideously poorly and he had real trouble gaining weight, especially after having a stoma bag. There was so many ups and downs through his stay, but we remained as positive as we could, as this tiny baby just fought all the way.
We spent a total of 128 days in NICU before we were finally allowed to bring him home, though the hospital started to feel like home and we really missed it when we went home. However Ralph is now thriving and recently celebrated his 1st birthday. He is the happiest little soul I've ever met, and he makes me and his Dad proud EVERY day.
Awareness For Kody
Awareness For Kody
Kody was my third baby, he was born in 2016. My first baby was born at 38 weeks, my second baby was born at 33 weeks due to pre-eclampsia, my third baby was born at 27 weeks plus one day due to pre-eclampsia and my fourth baby was born at 36 weeks plus 3 days due to pre-eclampsia, she also has a heart condition. My third baby, Kody, was born at 27 weeks plus one day due to me suffering with pre-eclampsia. He was on numerous breathing support and spent all his life in intensive care. Kody was transferred to Great Ormond Street Hospital to see if he had an underlying condition as he needed so much support breathing but he didn’t. His lungs were one of the worst cases doctors had seen, they were on the end of the worst scale. Kody had extremely severe chronic lung disease. Kody’s lungs were so undeveloped. Kody eventually got transferred to The Royal Brompton Hospital and had a tracheostomy. Kody’s lungs were so bad they started putting pressure on his heart, causing him to have pulmonary hypertension. At 7 months old, Kody lost his battle
Born too soon : Taken too soon
Born too soon : Taken too soon
On December 19th 2019, I gave a natural birth to my son Zachary George at 10:50 pm. He was born at 24 weeks, weighing 690 grams. Zach was rushed to a neonatal intensive care unit, where he was looked after by so many different nurses, doctors and consultants. Zach is my first child and I was so excited and over the moon about having him. I spent every day looking at him through the incubator glass, feeding him from a syringe into his feeding tube, changing his nappy when I could, making every minute count, taking as many pictures as I could. Zach’s eyes even opened at 26 weeks and I was so fixated on him.
Zach had such a character, he would get into all sorts of positions which always made me laugh. Zach always looked so comfortable and relaxed, every day was a working process and he was tolerating his feeds which were upping every day and his weight was going up too. I was so overwhelmed that he was fighting every minute. I knew it was going to be a while, but I couldn’t wait to take him home. I would read Zach story books every night so he could listen to my voice because the thought of him thinking he was alone broke my heart. I would leave him little knitted squares that had my scent on next to him so he could smell them. Zach was my whole world. I thought about him constantly. At 27 weeks Zach started to get an infection, he then had a collapsed lung, he was struggling to breathe, and fluid was getting trapped so the doctors had to put a drain in his lung to help. Later on he had to have another one in place and they stopped Zach's feeds. Zach's kidneys started to shut down and he wasn’t able to urinate at all. Everything just got worse and worse.
Zach died in my arms at 6:00am on the 17th of January 2020. I still remember his last breath, my world fell apart and my future plans were gone. I’ve never been so heart broken. I think about him from the minute I wake up to the minute I lay down. Zach is now my beautiful angel in the sky, forever & always.
I have had 2 premature births
I have had 2 premature births
I had a premature birth 9 years ago, with a little boy born at just 30 weeks. He weighed 2lb 8oz. He spent 6 weeks in intensive care and then came home. He is now coming up to 10 and is doing absolutely fine. I had another premature birth 2 years ago at 32 weeks with another little boy. He weighed 3lb 9oz. He was very poorly and we spent another 6 weeks in hospital. He was also born with the hsv 2 virus so we have spent countless nights in hospital since but he is 2 next week and is also doing well. I have 5 children in all - 2 boys both of which was prem and also 3 girls. I am currently 5 months pregnant with my 6th child who is also another little boy - as you can imagine, I am very apprehensive as my boys have all come early but what will be will be. My boys are doing very well considering what they have been through. It is a very scary and horrible thing to go through, having a premature baby, but the outcome can also be amazing. I have so much sympathy for anyone that has been or is currently going through this. My heart goes out to everyone who has been there and not had such great outcomes. I am so glad that Born Too Soon are here to help people and share other people’s stories - it’s fantastic.