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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.
William 24 weeker. 1lb 9oz
Story by: Amy
William was born 11th December 2020 in the USA/Texas at 24 weeks due to placenta abruption weighing a tiny 1lb 9oz. He had chronic lung disease and lots of other medical problems, he was intubated at birth and placed on a high frequency ventilator on 100% oxygen, drs didn’t think he would make it, by March william was given a tracheostomy and a g button/gastrostomy tube, he has come a long way and has spent most of his life in hospital. We moved home to the uk in March. He is now nearly 2! Decannulation planned for the future.
Story by: Sian
My baby was born 6 weeks early at 32 weeks. she's now nearly 35 weeks and may be discharged home this week thank you to the NHS for all their support and care they have given to my little girl ❤️. She's now discharged and settled at home
Story by: Terri
My due date was 21st March 2022. Unfortunately I didn't make it to this date. Due to pre eclampsia and my kidneys starting to fail, my son Myles had to be delivered via emergency c section 8 weeks early on the 25th January 2022.
I remember being admitted to hospital the Friday before his due date for daily checks. On the Monday a nurse said my blood levels had maintained a decent level and I was likely to be going home the Tuesday. Tuesday morning came and senior consultant came into my room and said do you know the plan. So I said yes I'm going home. And she said unfortunately not, we're delivering him today it is to dangerous for both of you at this stage. I broke down. I was so scared he wasn't going to make it.
The number of doctors and nurses that came in to explain the complications and worse case scenarios (must tell you) was unbelievable. I couldn't focus on the positive. All that kept going through my head was what one doctor had said. Don't worry if you don't hear him cry straight away. How can you not worry. I had to go on a food and drink restriction for what felt like days. Then at 5pm I was taken down to theatre. At 5.18pm my son joined this world crying.
The relief I felt when I heard that cry was amazing. I didn't care what happened to me after that. He weighed 3lbs 6oz. Spent 3 weeks on the NICU unit where the nurses where amazing. Couldn't thank them enough. Without the support of my fiance and the amazing work the doctors and nurses my son wouldn't be here.
Premature babies are miracles. I didn't even know I had pre eclampsia, I was still working and just went for a antenatal appointment. I felt fine. Its crazy how fast things can change. I'm just thankful for the support and my little fighting hero. Myles is doing amazingly well. He is 7lb 4oz and enjoys cuddles. Couldn't be happier now.
My little girl was 12 week early
Story by: Michelle
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.
My little blue frog and My little phoenix
Story by: Katie
Damon is my second born, my first born son. He was born at 30 weeks. I was so scared after having his sister before him who I had lost at 28 weeks a few hrs old. Also having lost his twin brother already. But he was strong he knocked the regulater mask out of the doctors hand when he was born and didn't want to be intbated. He came home at only 4 weeks old and only 5lb. He was a sick baby and toddler but thankfully has outgrown this.
He is now a happy healthy young lad Nala-Rose is my youngest child. She was born at 24 weeks. I call her my little phoenix which is her middle name. At a week old her organs began to fail and I was told she would live out the next 4 hours but she proved them all wrong. At 11 months old she has a cardic arrest due to sepsis and was declared brain dead and was again told she wouldn't make it and to turn life support of. I did so after being moved to a children's hospice with a load of family around. But yet again she prove them wrong 'that's my girl'. She lived until she was 20 months old and sadly got sepsis again and it was in her end of life care plan for no iv antibiotics. She was my fighter, my strength, who I look up too, and who I keep fighting for.
my story her fight
Story by: Carlin
I give birth (c-section) to a little girl at 30weeks and 2 days she was 1lb 10zs and was very small we were told to prepare for the worst, as even though she was 30 weeks she was the weight of a 25 to 26 week old baby.
It was really hard to grasp, she was in hospital for 3 months all together 1 month in the first hospital then transfered to a different one. It was the hardest thing I ever had to go through watching her fight her way through life I will never be able to thank the nurses enough who took care of her and helped her survive.
She is now nearly 9 months old and is doing really well, but now that i know this can happen I could never put another baby through it again. It turned out that I had maternal vascular malperfusion and fetal vascular malperfusion and i know it if I had another it could all happen all over again and it scares me soo much. I could never but another baby through what my wee one went through but all in all shes my wee miracle and i would never change her for the world
Summer born at 27+6
Story by: Dana
Hi my daughter summer was measuring very small at 25+6 weeks when I had a check up to why my fetal measurements were big and they found out summer was very small and gave me steroid injections. I also got admitted for high blood pressure and was told I was going to have summer early I was then referred to jessops wing which they scanned me and said they wanted me to have her there. I went back the following week for a scan and was admitted due to having what I thought was a sickness bug the night before.
I was then asked if I had lost my waters due to loss of fluid around her. I said not as far as I'm aware of so I was admitted and I had to have her delivered by emergency planned c section 2 days later due to poor blood flow and it reversing. They estimated her to weigh about 1lb 9 she weighed 1lb 5oz and she spent 3 1/2 months in hospital and came home on oxygen. She took a month to come off ventilator after them asking if they could give her steroids and explained if we didn't she might not of survived. She had a bad first 2 years being in and out of hospital and being sedated and placed back on ventilator at 10 months due to 2 virus that bronchiolitis carries but she has pulled through. She's a miracle she is nearly 4 and still gets poorly with colds but still proves she's a miracle and fights.
Story by: Vanessa
Troy was born at 35 weeks via c-section due to weekly scans showing less fluid around him etc. Weighing 3lb 14oz he stayed in nicu for 4 days before developing NEC which took over his tiny little body so rapidly, just short of 3hours fighting for his life he grew his angel wings aged just 4 days old.. Forever loved forever missed.
Story by: Maria
My 26 week warrior is about to turn 9 months old. I'm blessed my son Durjayveer Arjan Singh is in this earth with me. Durjayveer means invincible warrior. He spent 135 days at the Hospital in NICU and he showed me how precious life is and what strong means. My little Sagittarius ♐ was born at 26 weeks and 4 days, weighing only 832g.
Prior to his birth, I had hospital bed rest for almost three weeks. I was also admitted twice to the hospital when I was only starting my second trimester of pregnancy, I was bleeding without any medical explanation. I had a cervical stich placed at 13 weeks and had no medical follow ups or progesterone despite bleeding and being classified as high risk pregnancy. I had an infection (e coli) and it stayed there even after giving birth but no one bothered to test me to prevent it.
On the 6th 2020, doctors were telling me how low his chances of surviving were at just 24 weeks pregnant, but God had the final say and I went into labor on the 24th of November, almost three weeks later. When he was born they revived him and told me he had Chronic Lung Disease. He had sepsis, had two bad infections and was very sick in the beginning on oscillator and maximum breathing settings, at least 6 blood transfusions, and intubated for six weeks.
They even suspected he had down syndrome but genetics results came back clear. Yes, those slanty eyes are same as mummy's eye's 👀 His brain scans have been clear since he was born and his last echo showed his pulmonary hypertension is reducing, he still has a PDA and he will have to go under procedure by the cardiologist ❤.
I have cried, questioned myself, asked God why me, why? I still don't know why and everyday I still have to deal with this uncertainty. But my son gives me strength 💪 to move on. Parents of premature and sick babies keep the faith, God is carrying you and your baby through this journey.
Story by: Alexandra
I was prescribed Primodos way back in 1972 (now banned), within a day a knew something was far wrong. I had a threatening miscarriage at 4 months, then at 6 months went into labour. They did everything to try to stop it, but she was born that night. At that time I was not even allowed in the critical care unit, I had to stand outside looking through the window for 3 long months and it was unbearable. My little girl was in there, yet I couldn't touch her, speak to her, hold her. I felt this was so wrong, she needed to feel human touch etc; not to be just closed away in an incubator. Of course I knew they were doing everything to help her medically, but what about emotionally. I feel this damaged my little girl as she grew up with feelings of being unloved, inferiority etc; when in reality she was so loved and precious.
I am so glad that today the doctors now know that the simple human touch and contact helps so much. Those 3 months were the longest of my life. I held her for a few minutes the day before she came home, my husband only got to hold her when she was home, it was torture. She was due Chritmas time, was born in September, came home on Christmas Eve. I thank God for the Queen Mother Hospital, she would not have had such care anywhere else.
Story by: Lisa
Back in 1995 my little girl Megan was born around 27/28 weeks. I was suffering from pre-eclampsia and she was delivered by emergency c-section. She survived 8 days before passing away in my arms. I have, however, gone on to have two healthy children, aged 24 and 21.
My little Teddy
Story by: Agnieszka
I had really long journey to get pregnant...three rounds of IVFs. Developing OHSS. 9 days in hospital... Then have been on letrozole and miraculously got pregnant straight away. I got into 11 weeks and there wasn't any heartbeat 😥 6 months later we tried again... I got pregnant. But from very beginning, very anxious.. first three months bleeding where my period should be. But they couldn't find the cause of it (actually wasn't really looked into). Then I lost my mucus plug just before my 20 week scan...I have been told might grow back. So nervous at the scan, worried if everything is okay with the baby. But baby is healthy and perfectly formed. We also found out, is a boy 😊. Some kind of relief. But something is telling me something is not quite right.. on week 21 we announced the baby's sex to family and friends. Two days later I needed to phone a day assessment unit, as had a bit of brown spotting... And my worst nightmare was about to start. I have been told I'm already 1cm dilated..my heart sank. Have been put on the bed rest, and been told we needed to wait 48h to put the suture. That never happened, as they told me I'm dilated even further.. absolutely devasted. Six days later, after admission to the hospital, our son was born. Labour was pretty quick.. to my surprise. I have been told beforehand, they will not rescue him, when born. As he will be to small to survive 💔 We named our boy Teddy. We held him in our arms for 3 precious hours until he passed peacefully.
My twin girls
Story by: Sharon
Finding out you are pregnant with twins after 4 miscarriages, two of them pregnancy being girls was a big shock. We went for a 20 week scan and everything was perfect with them both, then we found out it was twin girls an even bigger shock because we never got this far with girls b4. Then in the same week my whole world come crashing down because I went in to labour with my first twin lacey at 20 weeks. She was alive for 30 minutes and then sadly passed away. Trying to grieve for what I just lost and trying to stay positive for my baby I was still carrying was the hardest thing I've ever had to do. Then a week later I went into labour with my second twin Mary Claire, she was alive for 17 minutes then sadly passed away and not day goes by I don't think about them and what they would be like now. I miss my babies so much and I know nothing will bring them back but hopefully in the future we can stop other family's going though same thing as mine did. Thank you for taking the time to read my story xx
My 34 week premature baby
Story by: Ruth
My son was born at 34 weeks. Probably as I had pneumonia and was desperate for some peace. He spent 3 weeks in ICU and HDU (all of which I spent in an isolated room on my own and couldn’t see him). I relied on my hubby taking expressed milk to him which was fed through a tube up his nose. Fast forward 17 years, he is a very healthy and happy boy who has just applied for The Royal Navy #superproudmummy🥰
My little miracle is a mum ..
Story by: Susan
My daughter was born at 30 weeks. I was told from early pregnancy I may not be able to carry my baby due to my own kidney problems and stayed on long term antibiotics. I managed to carry her until 30 weeks, when I went into prem labour her heartbeat kept stopping during contractions . So I was given an emergency c section. She was born very poorly and needed to be resuscitated and flown to a hospital 3 hours away because our local hospital didn't have the facilities to deal with a baby needing 24 hour care. I was unable to travel as I was also poorly. It was three weeks before I got to see my daughter. She finally come home after 5 weeks. Her weight at birth was 4lb 2oz dropped to just over 3lb and on discharge was back at her birth weight. She was a very poorly child. We nearly lost her twice during her epileptic seizures and needed to be resuscitated on a 999 call at 3 years old. She was born 1992. She is now a healthy young women, she still suffers with epilepsy and partially blind in one eye...but a mum to two beautiful children and a teacher to children with special needs. Miracles do happen. I was advised to abort due to my own health risks, but I choose to carry on and let my body and her strength decide the outcome. I am so happy I did and I'm proud of how far she as come. Our little fighter.
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 problem 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 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 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