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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.
Please be aware: the stories and photos shared on this gallery deal with the topics of baby loss and premature birth. The stories are written by the people who have shared them and reflect their own personal stories of heartbreak and fear, but also courage and hope.
Story by: Kirsty
Geourgia-louise was born at 24weeks gestation when she was born she was whisked of to the icu. She was only there 6 hours before she lost her fight for life. She had septicemia and e-coli and because she was on the edge of when they try to save there life, she never stood a chance. I have other premature babies, a daughter 25 weeks and son 30 weeks and my daughter 33 weeks. I need to know that in the future there is better chances of our little miracles having a chance of survival with more research into why this happens. Loosing my daughter Geourgia-louise broke me in two. I lost everything in my life due to her loss and its only 10 years later that my life has gotten easier to cope. I wish no one else would ever have to go through what I had to and have there baby die in there arms.
Story by: Sofia
Logan was born at 30 weeks old weighing 3lbs 3oz. I hadn’t even realised that my waters had broke, they broke 2 days before he came. It was a scary experience as I had gone to the toilet and pushed not realising until after I was in labour and pushing him. My friend rung an ambulance and the operator rung me and told me to lay on the floor and asked to feel which I did. She then asked what I could feel and I told her the top of his head so she told me not to push until the ambulance got there. They then had to ring the hospital to see if they needed to bring me in, which I thought was ridiculous cause he was coming. We didn’t even make it to the hospital before he popped out, so he was born in the ambulance.
It was very scary as he was very blue and small and wasn’t crying. The ambulance guy had to keep rubbing his back cause every time he put him on me he’d relax and forget to breath. Once we got to the hospital they cut the cord and took him in, I didn’t get to see him then until a few hours later as they were getting everything ready in the incubator and had to transfer him to hospitals. That night he got transferred to Cardiff and they let me go with him and gave me a room there for a few nights. It was a very rocky journey. First 3 days he was on a ventilator and he also had to be under phototherapy for jaundice. The fourth day when they were going to put him into cpap in the afternoon he only pulled the ventilator out a bit himself so they had to do it sooner. He wasn’t on that for long and then went onto high flow. He had a very rocky few weeks though, as he had really bad reflux that whenever they fed him through the gastric tube. His oxygen and heart rate would go down so they’d have to pause his feeds till they went back up. He got transferred back to the first hospital at 2 weeks old. There was the same thing with his heart rate and oxygen. He went onto low flow and had to stay on that a while cause he didn’t want to come off it just yet.
Some days I was scared I was going to loose him especially when one time I was holding him and the next minute his heart rate went down in the 60’s and then a bit lower again. I was crying and the nurse rushed to take him off me. Luckily after that incident he started to get a bit better and was eventually moved into a cot before then being moved to nursery 1. He still had really bad reflux though. When he was finally taken off the gastric tube and all support and moved to nursery 2 I thought nothing else could go wrong. He started to drink from a bottle and breastfeed a bit. Then the week he was due to come home he took a turn and got sepsis so he had to be put back down to a room on his own and back into an incubator. He got through it and then he had to stay another week before coming home as they weren’t happy with his weight gain, so he had to have formula as well. Luckily he gained the weight he needed to and finally at 9 weeks + 2 days old he was able to come home. He is now almost 9 months old and is a really happy and healthy baby.
26 weekend now 5
Story by: Hayley
I woke up at 25 +6 with pains, when I arrived at hospital I was given the news that I was in labour and 3cm dilated. They couldn't stop it, only slowed it. After numerous tests, 24 hours later it was decided that they needed to deliver my baby ASAP as there was an infection eating the umbilical cord. I was terrified. My baby had 40% chance of survival. Before I knew it my baby was being whisked away from me, no cuddle and only a brief look at her. My heart broke. It felt like forever until I could see her and I sobbed when I did. Wire's everywhere, nurses speaking a language I didn't understand and a feeling of hopelessness, guilt and shame. Questions swirled in my head; why has this happened? Why me? Is it my body? Could I of done anything to stop it? The questions went on and on, for years, and still sometimes today.
As the days went on, I began to learn things and become involved more in my babies care. It was never easy, she had a PDA which is an extra opening in her heart, Collapsed lungs, MRSA, ROP, laser surgery, the list was endless. Each time I felt we were progressing, something happened and would set her back. Each setback got harder, wondering would it ever end? Would my baby ever be better? Would she ever come home? Going home on my own each evening was the hardest, my baby should of been with me, yet I had to leave her with strangers. Them strangers eventually became family, other parents became friends for life and over time my girl got better and finally came home. 11 weeks later, I again cried, happy, terrified, felt like I was leaving my family behind to do it on my own with people who had no idea what I had been through.
My little girl is now 5, 6 in August. She is amazing, she has problems from prematurity, and we are still discovering new problems today, but she is happy, she is safe and she is here! I am thankful every day that she survived. It is not an easy journey, I still suffer from PTSD to this day from my experience, but its made me strong and my little girl even stronger. Remember there is light at the end of the tunnel, it may be in the distance for some but it does get closer. 5 years on and I am finally starting to feel like I'm reaching my light.
My Angel Tao
Story by: Jane
Tao Jamie was born 25 weeks by emergency c- section. He weighed 990g and looked just like his dad. The day he was born he had to be transferred to another hospital because he needs surgery on his guts. He fought for life and made it through his surgery. Unfortunately the blood to his tiny foot was cut of and his foot turned black but that didn't stop him, he was very active waving his arms around. He was doing really well and I got to hold him for a couple of hours, and he had his first bit of my breast milk. But that night, at about 11 pm the hospital called, I needed to get there fast. The doctor was doing CPR but couldn't save him. They placed him in my arms and within minutes his really slight heart beat had stopped. I layed in bed with him all night before I had to let him go. Mummy and Daddy and your bothers and sisters love you so much my beautiful baby boy Tao Jamie.
Story by: Liz
I was 27weeks pregnant when I had a c section, my son was 2lb 2oz. He was born in Victoria hospital in Blackpool and he had tubes everywhere. I didn't think he would make it, but he is 33 this October.
My son Shane
Story by: PAMELA
I went into labour at 26 weeks the hospital stopped it, but after a few hours it started again, remembering this was 1980. I had my son, he weighed 1 lbs 15 oz but there was a problem. I fell pregnant after having the coil fitted so it was not removed after he was born, I bleed alot before the midwife noticed. Anyway he kept having problems after problems, he would even pull out his tubes. After a while I didn't want to visit him incase he died. I had two older children under 4 and I was really drained.
Finally he was allowed to come home after 4 months. After a few days I noticed something was wrong, he would just scream out as though someone hit or pinch him but there was no one there. Two weeks later I found him unresponsive rushed him to the hospital but he died. I wanted to die but I had 2 other children to take care of, this was the worst time of my life. All these years later I still remember and feel it as if it was yesterday. After the postmortem he died of a rear bone disease and bad case of rickets which bought on pneumonia. I went on to have 3 more children safely, they help me deal with my loss.
My twins boys were born at 33 weeks the baby on the left side sadly passed away 11 days old he called Keanu-Reece and the twin on the right side is called levi he is doing well
Story by: Tania
Hi how r u all? I found out on the 1 April 2019 that I was pregnant with twins boys. I had them on the 3 July 2019, but sadly Keanu-Reece passed away on the 14th of July 2019, the worst day of my life, he was 11 days old when he passed away. It still hurts to, I will never get over the death of my son my name is Tania xxxx
Born too soon
Story by: Gillian
I gave birth to a beautiful little boy Christopher at 29 weeks. He was poorly from the start. I was woken 4 days after giving birth to the news he had gone downhill during the night. We had him christened and he appeared to pick up. Sunday 20th May we were told he needed his tube reinserted and we were told to go have lunch with my mum while they did the tube for Christopher. We arrived back at the hospital to be taken to one side and told, Gillian we are so sorry Christopher is struggling as you have not had to chance to hold him we will administer his oxygen by hand so you can hold him. Every parent's worst nightmare we were living it. He would be 31 now but the pain is still there like it happened yesterday. I went on to have 2 healthy children but Christopher stays with me as I carry him in my heart always
Born too soon, but okay now.
Story by: Katherine
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.
My Little Fighter
Story by: Rachel
Evelyn was born (27.11.19) at 25+3 weighing only 440g, that’s not even 1lb. She had a traumatic start in life, contracted sepsis twice, ROP, Chronic Lung Disease, kidney failure, multiple blood and platelet transfusions. After being ventilated for 2 months she moved slowly through the NICU, our due date came and went and after 6 long months in the NICU we were discharged home on oxygen and with a feeding tube. Our miracle arrived home 1 year ago today (18.05.21) is almost 18 months old and astounds us regularly as to what she has achieved. We’re so grateful for the work the medical team at UHCW did for her and us we can never repay them.
my little miracle
Story by: Danielle
Hi I had my little miracle Kristina on the 4/6/19. She was 3 months early, her due date wasn't till 25th of august. I was 28-3 days when I got a c section. I went for my scan at 28-2 day's and they told me I had to go to wishaw that day. I was so scared I didn't know what to expect. They just told me at my scan that my little girl stopped growing, she wasn't getting enough fluids, so they told me it would be best to get her out, there would be a better chance of surviving outside the womb. I went into hospital that day, was placed on a machine so the nurses could hear Kristina's little heartbeat. I kept the last scan I had in the hospital with me. I just wanted to hold my baby and love her with everything I had. The next morning came, I was waiting to get taken into have my c section. I was given a jag to numb me from my waist down to my feet, I couldn't feel anything. I knew this is time now I'm going to meet my babie earlier than I should have, a lot earlier. There was 15 to 20 nurses in the room when they were delivering Kristina, all I could feel was nurses pulling me from the inside of me it feel they were tighten my stomach, but eventually my little miracle Kristina was born. She wasn't crying when she came out, so I asked why is she not crying, the nurse said don't be alarmed but I was so terrified. Then I heard her crying I thought thank God she's crying.
I didn't get to hold her after she was born, she was put a incubator then taken to the NICU. It was honestly really a hard journey for Me and m. babies dad and my family at the time. Kristina stayed in wishaw for 3 months in NICU. She was really sick when she was born, she was the smallest babie in NICU and the only babie that left without any oxygen. She is a real true miracle, but I took everyday as a blessing waking up and seeing Kristina lying there that made my whole day, just getting to speak to her and cuddle and kiss her it was the best feeling in the world. We also had to go to the Queen Elizabeth Hospital 3 times because when Kristina was just first born she had major problems with her wee belly, they thought it was going to blow up, so we had to go to Glasgow for Kristina to get scans done and stuff to find out what was wrong. I just loved seeing her face morning and nights, she is a truly a dream come true she's my best friend for life and she is here now to have a good life to explore the world. She will be a big 2 next month on the 4/6/19. I'm so blessed to share this story with yous, sorry it's not that long. Kristina was also feeding out a tube for months and month's they sometimes had to stopped giving her milk because of her stomach blowing up, then she was starving looking for food but she's so better now. All she wants to do is run about wild Kristina has an older sister at 7 just now, so they've got each other. Wish everyone the best of luck and hope all babies in NICU are doing well thanks x
Story by: Kayleigh
My beautiful girl was born 3 months early 26 weeks.. my body was ready to meet her, but she was not so had to have an emergency c-section. She was born at 14.25. I didn't even get chance to hold her, all I remember was her being put in an incubator and off she went to NICU.. so around 10'oclock that night I finally had the news she is stable, those were words of relief, as every time I asked how my baby was all I was told is she not stable. Around midnight I was aloud to finally see my beautiful girl, she was 1lb 14oz born, she was so tiny you could she her tiny body fighting to be here with me. After many blood transfusions, infections and biopsies and 89 long days in NICU, we was allowed to bring her home on home oxygen 2 weeks before her due date.
Christmas week she finally went off her oxygen, no medication, and she is thriving ...now may 2021 she is growing beautiful and is 9 months old.. if it wasn't for the amazing doctors, nurses, consultants, the medical research, she wouldn't of survived.. i owe everything to them, thank you..Alaya mae watts born 20.08.2020 she is my miracle baby girl.
Identical twins struggle.
Story by: Nadia
I had my identical twins through IVF after trying for five years. My pregnancy was ok up until twenty five weeks, when I had daily contractions luckily my cervix didn't open until 33 weeks. I had severe pre-eclampsia and I was going to have a c-section on the Monday, but my waters went at 33 weeks 2 days and they had to do an emergency c-section. Joshua was born with polymicrogyria and lack of white matter of the brain making him blind. He has severe global delayed development. Jack has genetic problems the same as Josh and he has slight global delayed development and asthma, but they are both doing amazing.
Josh has the brain of a two year and is starting to walk. He has only two words . He can see most things now, it started of with him just seeing lights but now has pretty good vision. Jack is slightly behind developmentally, and has only three words, and has arfid eating problems now. They are both at special school but in different classes as Josh needs more help. They are both coming on amazingly. Josh has stopped his fits that he had every day and night and us off his medication. They both had jaundice at birth. They are both coming on so well and amaze me and the medical staff all the time.
Story by: Karen
My beautiful baby Liam was still born on the 12th nov 1992 . He was 6 days overdue and weighed 8lbs 8ozs, there was no reason for his death. It was a very long labour and very hard as he had already been dead 24 hours befour. I will never ever forget that day 29 years in Nov for him, I never forget him ever xxxx
Story by: Teresa²
I was 19 when I lost my baby at 18 weeks. It was awful, they put me on a ward of ladies who had all had hysterectomy's. My baby was put in the incinerator I was told, I just wanted to say goodbye but was told in such a horrible way. And all they said was your young, you will have more. Happily I have 4 beautiful children, but had lost 3 other babies in between my pregnancy's such a lonely place to be a painful place. Reading what you have all been through is so sad, we can only hope research happens quickly so others can be spared the heartbreak.
My lost baby’s
Story by: Carol
I was 19 when I got to nearly 8 months and went into labour for 9 hours and my baby girl was not alive. We was not allowed to see her, she taken away and we were told would go in the Incinerator, my heart broke. We were told your young you will have other children, twice more 6 months gone same story. Then some very kind doctor explained you have a weak Cervix so you will need to have a stitch put in which is called a shortcut suture. My 4th pregnancy I had this put in at 12 weeks and taken out when I went into labour at 33 weeks. I had my first boy Aaron then when fell pregnant again. The consultant said won’t put stitch in till 20 weeks. I got to 19 weeks and lost another baby girl, heartbreaking again. Felt like a baby machine eventually 10 pregnancy’s and 5 beautiful boys later I have my family. The hurt never goes and the you are young you will have more dose not take away the hurt the pain please not right but never give up.
Hope for all
Story by: paul
My son was born on the 31 July 2009 on a Friday. He was 24 weeks premature and weighed 1lbs 5 ounces. Everything was fine til we noticed his stomach had bloated. We questioned this and was told it was just wind. That was on Saturday. Sunday morning we made our way to St Peters SCBO to spend time with Alex, but when we got there, they were already getting him ready for transfer to Brighton hospital for an operation. We followed the ambulance down to Brighton and met the specialist who told us that he only had a 10% survival. An ulcer had burst in his bowels and that they had to cut bowels and put them on the stomach. We signed the consent forms and waited. Our lives had turned upside down, as we sat there like zombies.4 hours later we were told that the operation was a success, but had to stay here for 3 months.
My partner stayed and I went home to my other son who was 5 at the time. Everyday was a nightmare not knowing if he would survive. After 3 months at Brighton Alex was transferred to St Peters Chertsey where he stayed for a further 3 months. During that time it was lovely to see him, but still not knowing what will happen.There were times when we showed up and had to come away as another premature baby had passed away. We couldn't bear it .The specialist asked if we would consent for his operation to be put in the medical journal without his name mentioned, as this was the first ever operation of this procedure on a 24 week premature baby, which we agreed. 3 months later he had his bowels put back together, within 9 months he was home.
He came out of all of this with just a murmur on the heart, which eventually past, and a war scar across his stomach. He is now 11 happy go lucky guy. There is hope for everyone, please never give up hope,10% is better than nothing.
My Twins (happy end)
Story by: Diane
My twins were born in 1987 at 28 weeks into my pregnancy. I was 20, healthy the pregnancy was going very well. I went into labour they didn’t seem to know why. I got taken to a room were so many doctors were there all telling me there role. My head was in a spin, I didn’t know what was happening. I got told I had to give birth after they were born they were took away to the nic unit and we didn’t see them until 7 hours later. No one told us what to expect, it was so frightening. We were told one of the twins was to poorly and wouldn’t make it. They were in hospital for 3 months, but they both survived they are 34 now.
They discharged them from hospital when they were 5. They had a rough first 2 years, but after that they have been healthy with family’s of there own. I don’t know what we would of done if we lost them. My heart goes out to everyone on here who have lost babies born early and not made it. I’ve put my story on to all mums and dads that have babies early it can turn out all right, but not everyone as been as lucky as us but the thing is no one could give me any answers why I went into labour at 28 weeks. I wanted some sort of answers, but they could not give me any, the only thing they told us is these things happen and probably there wasn’t enough room for them. I was being checked all the time so wouldn’t they have seen this on scans. Parents need answers especially if there babies didn’t make it. I think it helps slightly for mums and dads to eventually with time move on.
Our twins fight isnt over
Story by: Cassie
At 16 weeks I was told to go to the MAU as I was leaking fluid. I didn't think much of it after having a 24wker 7 years prior. I thought nothing could get worse. After seeing a nurse and Dr they examined me, and their faces told me in that split second what was happening. The consultant told me I had bulging membranes...I was losing my twin boys. A surgeon told me he would take me to theatre to try a stitch, but there was a extreme high risk of nipping the membrane and I would lose my boys in theatre, so my option was to try because if I didn’t I was going to lose them. Whilst in theatre all I could do was hope. It felt like I was holding my breath for the longest time. My cervix was so short he wasn’t sure if I would make it to 22 weeks.
At 20 weeks I went into labour which was stopped, then again at 23 weeks. I was told no NICU beds were available in London the closest was Brighton, but the labour was stopped. At 29 weeks at 6 days, whilst at home with my little girl who was eating her breakfast, her dad had just got into the building site he was working on in London, my waters broke. My dad took me to the hospital where it was confirmed I was in labour, my little boys were making an appearance. In the early hours on the 25th August I was taken to the labour room, my partner was called, the NICU team came up to meet me. This was it, I knew what was going to happen because of having my daughter at 24wks I was calm scared obviously. My cervical stitch was cut but only half of my cervix was dilating in that moment the boys decided they weren't playing ball anymore one went bradycardic the tachycardic. I was rushed to theatre within 5 minutes. I hadn't ever seen so many people in a room. I just remember thinking "oh no this my biggest fear ". Within 10 minutes Buddy-Lee was born at 1.06pm and Arnie was born 1.07pm on the 25th august 2016 weight 2lb each. I didn’t get to see them I just heard a cry they were taken to NICU once Buddy-Lee was stabilised.
Once they left, I took a turn for the worst. I lost consciousness and don't remember anything other than waking up in a room surrounded by loads of drs and nurses on oxygen tube everywhere my body was in shock. I got to meet the boys the following day. Buddy-Lee was on the vent and Arnie on CPAP but both doing well. Arnie was on and off CPAP and vapotherm then oxygen. Buddy-Lee was off his ventilation and was doing amazing. Both boys went to SCBU at 18 days old they looked incredible. Arnie was still on oxygen, but Buddy-Lee was bossing feeding the lot the team said if he was 4lb and a few weeks older he would be at home, but something felt wrong. On a ward round I said to the consultant (the same one that diagnosed my daughter with meningitis while in NICU ) something doesn’t feel right...low and behold a mothers instinct isn’t wrong. That night I got a phone call at 2am to get to the hospital. Buddy-Lee was being transferred to the Royal London...my heart sunk. We got there and all I could see was the x-ray of my boys belly. He was so sick the transfer team ( ANTs) were trying to stabilise him...at 9am after 4 hours of trying to get him just right for transfer I had to kiss Arnie goodbye. Luckily my mum was with him in hospital. My partner followed the ambulance, but he was on blue lights racing down the A13 all I could think was don't die.
Once at the Royal London there was the biggest team of medical professionals I had ever seen waiting for my boy. The consultant cuddled me as I stood not knowing what was wrong. He confirmed my son has a life threatening, very fatal disease called Necrotizing enterocolitis. His bowel had perforated, and he needed life-saving surgery, but he was too unstable. We were put in the sick children’s trust, which helped us rest, but at 5am the next morning we were back sitting by Buddy-Lee's incubator as the nurse was preparing him for surgery. The surgeon and the consultant sat us down and told us very straight our little boy had a 2% chance of survival whilst in surgery. If there’s nothing he can do, he will sow him up and bring him back up to pass away, if there is he will do everything. We walked down to theatre the whole team, the surgical team, 3 NICU nurses, me and his dad. We had to say our goodbyes at the theatre doors, my heart was hurting I couldn't stop crying. Whilst Buddy-Lee was in surgery Arnie's consultant rung from Basildon, they had to put him on antibiotics as a preventive for NEC. I was torn, I was a mess...4 hours later our little boy came up and the surgeon sat explained everything, said Buddy-Lee's bowel was so bad every time he touched it, it crumbled, but he was left with 10cm of small bowel and a stoma. He wasn't out of the neck of the woods he was also battling sepsis and Necrotizing enterocolitis. When I asked when are we transferring back to our local he said your not, you’re going to be here for a year...I laughed in shock. We were told we couldn't leave Buddy-Lee for 2 weeks as he was too critical his chance of survival was 1%...
After 2 weeks I went to see Arnie. He was doing amazing, full feeds, oxygen breaks and he was bigger (thank god for my mum ). 2 weeks after Arnie came home weighing 4lb, Buddy-Lee was stable. He was on and off the vent for 6 weeks. 8 weeks after surgery he had his stoma reversed. It went amazing until 4 days after he got taken down for another life saving surgery, his stitches holding his bowel together had leaked in 4 places...after another 3 hour surgery he was back up fighting sepsis again. He couldn't come off the vent for 4 weeks, when they tried, he stopped breathing, it was a long road...in January Buddy-Lee had that stoma reversed after surgery he went to PICU as he wasn’t a neonate anymore. He looked amazing, his surgeon said how well it went, he was pleased after every surgery. I always asked is he going to be okay, he always said I'm in no doubt. Later that night we kissed him good night, went over to the sick children’s trust to eat and recap on how well Buddy-Lee looked. The next morning, we see him and he looked huge, pale and not good at all. The consultant explained Buddy-Lee was in multi organ failure, his lungs were bleeding, his kidneys were failing, we were told he had 2 hours to try and pull something amazing out of the bag. His NICU nurses came to say goodbye. His surgeon I asked once again, he is going to be okay, isn’t he? He sat us down and told us Buddy-Lee's had a stroke I don’t no if he will pull through this! My partners mum who lives in Australia jumped on a plane that night, my mum and brother in law came up the hospital. We were told our little boy was the sickest child on PICU that at moment. 40 minutes later Buddy-Lee was placed on a oscillator machine that is ventilation by shakes the lungs keeping them moving...it sounded like a hammer drill. I couldn't help my little boy, he had 17 medications a Hickman line ( for his TPN ) a central line in his groin and head. Cannulas in his hands and feet, my boy was fighting for his life harder than ever. 2 hours later his blood gases weren't as bad. He just needed time to recover from shock sepsis. 6 days later they tried to take him off the vent, but Buddy-Lee wasn't playing ball. He didn’t cope so ENT came observed the next attempt if it didn’t work a tracky would have been placed but Buddy-Lee played ball.
I finally got to hold my little boy, but something was wrong he was different, he was addicted to fentanyl. He was placed on a high dose of morphine and moved to his gastro ward where it became home for 11 months. Buddy-Lee came home on home TPN till he was 3, however Buddy-Lee is total peg dependent. He doesn’t eat or drink, everything goes through his feeding pump. Buddy-Lee has Short bowel syndrome (10cm out of 21feet remaining) with associated liver disease, gallstones, autism, global development delay, cerebral palsy, sensory processing disorder, OCD, PTSD, laxity of the joints and colus of the ankles and knees. Arnie has scarred lungs due to having croup so many times with severe chest infections, an unsafe swallow...he has high functioning autism and a chronic bowel condition.
She laughed in the face of death
Story by: Cassie
At 22 weeks I started to feel some different pains, my mum said they could be braxton hicks and to put my feet up and rest .. which I did until 23weeks and 5 days to which i made my way to A&E. They took me to the maternity unit, which confirmed I was in active labour. I was 19 and also very scared. Never did I think anything like this would happen. I wasn't ever told about extreme premature births. The consultant and his team came in my room and told me to brace myself for the worst, as at 24wks, I was told she's coming today and we can't stop it happening. My waters broke and they were bright green and smelt like sewage, I had a major infection and so did she. At 10.29pm on the 3rd of December 2008 my little 1lb9oz little miracle was born. I didn't even see her, her cry was so quiet, the NICU team whisked her away. I didnt see her until the 4th December, the following day.
When I did get to see her I never thought the 1st time of seeing my little girl would be so hard. I couldn't touch her, her skin so see through, she was as red as a berry. When asked what her name is, so the nurse in nice could put it on her file, I took one look and said Logan Leonie. Other than not tolerant of any milk and not being able to get past 1ml of milk, she was doing well. I got to hold her for the 1st time on Christmas day at 22 days old, all over her were wires and tubes that where bigger and weighed more than Logan, but I didn't care. I held my little girl and thats all I needed.
Logan became tolerant of a milk, called neocate, she was growing she came off the vent and went to scbu. Her 1st day in scbu she looked pale, she was projectile vomiting and had explosive diahorra. When I called for the nurse she pulled the red emergency buzzer a team came in took my little girl and put her on a crash bed. I didn't know what was happening, once stable she was taken back to nicu and needed cpap put back in the incubator.. I was devastated. I sat with her all day till 9pm at night, I needed to eat and most of all definitely needed a shower. Whilst at home I got a phone call to go straight back, the consultant said they are suspecting meningitis my heart sunk I didnt understand how did she get this? Why wasn't I poorly?
When I got back to the hospital I had to consent to a lumber punch for her, all that was explained was she had to have needle in her spine. I walked in on them bending my little girl in half, Logan was on the vent trying to cry but no sound was coming out. I broke down not being able to help her. Later that night it was confirmed Logan had streptococcal meningitis. We were told to get ready to say goodbye . She was in a room on her own, her nappy couldn't be changed properly because her heart would slow right down, so the nappy was placed under her not done up. She looked as flat as a pancake. 2 days of people giving you the look of sympathy I just wanted scream at everyone. I was so angry at the world . On the 2nd evening we were told it wasn't looking good as she had now had a bleed on her brain. For 2 weeks I watched my little girl fight so hard to be told she isn't strong enough they don't think she will make the night. But my little girl did, she made the next night and the next night, every night till she came home at 6 months old weighing 4lb.
My little girl is 13 this year. Logan has cerebral palsy, autism, ADD, a chronic bowel condition and non eplieptic vacancies. Logan attends special needs senior school where she has grown into such a loving caring girl ... shes my little Logan berry.
Story by: Amanda
I had twins 23 years ago born at 23 weeks. My little girl weighed 1lb 5oz, my son weighed 1lb 71/2 oz. My little girl died at 13 days old and my son was in the special care for 4 1/2 months, he is now 23.
My little miracle
Story by: Zoe
My little boy was born at 28 weeks weighing 1lb 8oz. We spent a very long 14 weeks in NICU, 1 step forward, 3 steps back, but he amazed me every day with his strength and determination to live. He fought off infections and stopped breathing needing resuscitation. I thought I’d lost him as they whisked him off blue and lifeless, my screams being heard all over the unit. But he made it through that too, my absolute hero, my true little miracle. He’s now almost 2 and a very happy healthy little boy. He’s small for his age but definitely not in personality!! Never give up, these tiny little babies are the strongest people I have ever come across. 🥰💙🥰
Preterm baby (Isaiah) now 5 years old
Story by: Donnah
My son Isaiah was born on 17th February 2016, due date was 17th April 2016. Labour started at 6 1/2 months, but I stayed in hospital for a month and managed to deliver at 7 months 3 days to a preterm 3 pound baby. I was able to get steroid for his lungs. He came out not breathing, so was assisted resulting with him now, 5 years old, having a few health problems. I donate wipes, cotton wool pampers and preterm clothes every year on my sons birthday to show my appreciation. My baby boy is thriving specially with the support he is getting from NHS.
Our beautiful Belle
Story by: Jennifer
In 2018 I first fell pregnant, however we found out at our first scan that our baby’s heart had stopped between 8-9 weeks of pregnancy and a missed miscarriage was the diagnosis. Fast forward to June 2020 and we couldn’t believe we were having another baby. We were so nervous the same thing would happen, but this time our baby’s heart was so strong and everything seemed perfect. At 16 weeks 3 days I began bleeding, had a sore back and extreme tiredness too during that week. By the Sunday I was fully dilated. I was admitted into hospital and told I had an incompetent cervix & may deliver overnight, thankfully I didn’t and they were able to give me an emergency cervical stitch. Each scan there after the amniotic fluid was always low, Belle was very low and didn’t seem to change position very much. They were worried about her limbs being distorted due to low fluids and her possibly being stuck in the same position for weeks. They thought she only had one kidney at one point, luckily it was confirmed she had two.
At an appointment at 22+4 I was admitted for bulging membranes, I was given steroid injections and a magnesium drip and at 23+2 I gave birth to my little girl. They didn’t expect her to weigh 1 on, they estimated she would be less than this. They scanned me before removing the stitches so I could deliver my daughter & found there was no amniotic fluid left at all. The doctor delivering Belle told me that they didn’t know if she would make it through the birth and if she struggled they couldn’t offer a c-section as she was just too small. The cord prolapsed and Belle needed to be born quickly. Thankfully she was. My husband’s face turned white when he saw just how small she was. We both cried as the NICU team worked on her. They told us she was stable but it seemed her heart and lungs were worse than they expected.
Belle did so well and they always joked how fiesty she was, pushing their hands away, covering her eye from the light even though they were still fused shut. She hated when they touched her, her levels indicated this & when my husband and I touched her all of her levels improved. This was such a special experience. It was like she just knew it was us. At 7 days old Belle began to swell and they told us she had sepsis and it was critical. They said she had been so strong throughout and hopefully she would again. We stayed with her and cried, prayed and told her how much we loved her. They told us they had tried everything they could and she was just too poorly. This was the worst time of our lives. We told Belle we were proud of her and loved her so much & if she needed to go it was ok. We also asked her for a sign. We put her back into her incubator and her heart began slowly dropping. We knew this was it. My husband carried our beautiful girl to the family room where our parents could meet their grandchild for the first time. Belle waited until my mum held her before she took her last breath. We miss her so much and think of her every minute of every day. We long for that day we will get to hold both of our babies again and never have to let go.