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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.
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.
My son Shane
Story by: Pamela
My son Shane was born on 5 March 1980. I gave birth to him when I was 26 weeks pregnant he was so small. The doctors and nurses tried so hard for him. He put on weight and grew and was able to come home after 4 months, but after 2 weeks at home I noticed something was wrong he would just cry out as he was in pain. He then went silent and we rushed him to the hospital where he died. Later we found out he had a rare bone sickness, myself and his father was so broken but we where lucky we had 2 older children that helped us get through it, but it was hard. I wish no family should go through this, but it happens. Sorry for all the families that have gone through this,
Story by: Trish
Our story begun on Tuesday 23rd June 2020 at 22:15. I was 29 weeks gestational, I was woken by my waters breaking. We quickly shot up to the Maternity unit... It was confirmed that my waters had broken but there was no sign off labour. The doctors wanted to keep me in for observation... I was due to go home Wednesday 24th June 2020.... I was about to be discharged when my gorgeous little girl decided it was time to come into this crazy world.
Trish was 29 weeks gestational, when her waters suddenly broke and she was rushed to hospital. Doctors confirmed that there was no signs of labour, but just the next day, when she was due to go home, her little girl decided it was time to enter this world. I was quickly taken to the delivery suit where I was given several different medications to help my daughter... the NICU staff were present, and they talked me through everything that was going to happen once my girl had been born. 02:06am my little girl was born, they quickly took her and put her onto the resuscitation bed (unsure what it’s real name is) they put a ventilator into my daughter I was so scared and worried because I couldn’t hear her crying or any form off movement, my Partner was by me trying to keep me calm, she was then quickly rushed into NICU where later that morning I got to see her for the first time, I didn’t get to see my daughter until 6:30am. I was still in the delivery suite, and my partner had to leave at this point due to COVID-19 restrictions. I then went into theatre to have my placenta removed due to it been stuck. My daughter was getting on really well in NICU.
She had her ups and downs but got threw it. We took everyday step by step, as one day she would be doing fantastic & the next day she wasn’t doing so well... After 7 1/2 weeks in NICU we finally got to take our precious girl home. Our daughter came home on oxygen as she wasn’t coping very well without it. At 6 months old our beautiful girl said goodbye to the oxygen. My daughter is now 8 months old (9 months in 3 days) and doing absolutely fantastic! We cannot thank our NICU staff enough for saving our daughter life and allowing us to have such an amazing life/ future with our girl.
texas my hero
Story by: heather
I did not know I was expecting untill I was 5 months. My son was born a month later with a lot of health issues, including heart problems. He weighed 2lbs and after a lot of heartache and time in hospital he is now 24 years old. He has cerebral palsy, but nothing stops him. He has fought health issues all his life, but now a lovely young man and at collage doing teachers training course. Its only due to the great support of the hospitals and nursing staff.
She couldn't wait to meet us!
Story by: Gemma
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
Story by: Joanne
Born at 27 weeks one with Cerebral palsy and the other with hydrocephalus both made it and are nearly 29. Thanks St. Marys in Newcastle.
My pandemic premmie
Story by: Kerri
This is Frankie, she was 8 weeks early due to placenta previa. She was in nicu for 2 weeks and scbu for 2 weeks, she weighed a lovely 5lb 6!! I caught Covid when I had my emergency csection so I wasn’t able to see her for 2 weeks which was awfull! And her dad couldn’t meet her until she came home! She was very poorly to start with, but she was so strong she just got better every day, she is now 11 months old and doing amazing. x
Born too soon
Story by: Sharon
My twins were born 32 years ago at 26 weeks, weighing 1.10oz and 1lb.15oz. They were born in the jubilee hospital in Belfast. Every day was a nightmare, both were in the neonatel ICU unit and on life support due to lungs not being developed. Alarms would go on and of all the time, never knew from one hour to the next what would happen. There were days they had good days, and days they would have bad days. At 3 weeks they was both taken of life support and apart from being very small, they done very well. They still had oxygen, but it wasn't on very high and at 9 weeks both were feeding by bottle and there weights had went up to 2lb 8 and 2lb 4. They had been moved from ICU and into premi ward and in cots and out of a incubator.
Being born in June, it was the middle of September before we got the heaviest twin home and Oct we got the smaller one home. Apart from childhood illness. they never really looked back. One is now married and as you can see in photo, they are identical and are now 32 year old, so anyone with a baby in the ICU unit you need to take everyday as it comes. Some days will look like everything is going well and next day you could be back to square 1. Some days you spend all day waiting by the phone and by evening they were doing well, just you never know from one hour to the next what will happen. It can be a very stressful time for parents and family members. I went on to have 2 other children also born prematurely, one at 5 weeks and one 9 weeks early, and all 4 have never had any problems once they left hospital. I hope this helps with anyone who has a premi baby, just take one day at a time
Story by: Ben
My partner Clara was pregnant and due to give birth on 8th February 2021, however, on 17th December 2020 I had returned home from work and an hour later Clara started having contractions. I wasted no time and I got her in the van and drove her to Medway Maritime Hospital Kent, we arrived not a moment too soon because I was told ( go in room 8 YOUR HAVING A BABY right now!). I went into shock, but I composed myself so I could support Clara. I was at Clara's bedside and watched the entire birth process thanks to Borris Johnson's legislation on allowing dads to be at the birth during covid 19 !
Baby Molly was born at 1:36 am on the 18th Dec 2020 weighting just 4lb 13oz via natural birth. Molly had to stay in icu for 16 days, which felt like a lifetime as we just wanted our daughter home. However her stay in icu was essential for her and she reached her mile stones quickly and was able to come home with us for the first time on 4th January 2021. Her stay in the icu for that period of time, while essential for molly, was difficult for us as parents as whilst being allowed unlimited access to her in icu, we where not able to bond with her naturally in our home environment in those crucial first few days/ weeks. We did not feel a bond with her, nore did we feel the love we expected to feel. I was concerned about my state of mind and Clara's also, and felt angry that we felt so numb, as we had decided to have a child to love and take care of, and since I was actually in foster care on a section 31 care order for my entire childhood, these feelings of numbness really really concerned me as I was scared stiff that I'd become like my parents and reject my own daughter! This however was completely normal because we where unable to take her home immediately, therefore was unable to establish the parental bond we longed for.
This, however, was quickly established once Molly was home safe with us and now all is well. The entire thing was a rollercoaster of emotions and emotions that took us by surprise too. Now 8 weeks later, baby Molly is doing very well and we both love her with all our hearts, She is suffering with Colic which is very common regardless of being premature or not! Colic is trapped wind and is very uncomfortable for the baby and will make the baby scream and scream relentlessly and it is very stressful for baby and parents, but there are medicines you can give baby before meals that will ease there discomfort and give the parents a night's well needed sleep! Other than the very common Colic issue, which we are treating with support from the gp, Molly is doing fantastically and we couldn't be more happy.
Hope some of the things I have said will help others who may be struggling with there thoughts, the entire thing is a mine field of perfectly normal emotions that don't feel normal at the time. I also found that watching the physical birth process happen bought me and my partner closer together 😀
A.J and KYLE JAMES
Story by: Cas
When I was 18 I met what I thought was my forever. We were together for about 6 months when I found out I was pregnant, I was taken to hospital because I was in so much pain, thats when I found out I was 3 weeks pregnant. My pregnancy was pretty straight forward except I was huge. I was a size 10 then at 6 months pregnant I was a size 22!!!!!
At 37 weeks I was tiny again. I went to see my midwife and she said it was fine, she said it was nothing to worry about and would book me in for a scan in a week, the day before I was due my scan I was really ill. I phoned the hospital and went in they gave me a scan and told me A.J had passed away. He weighed 3lb 11.5ozs. My placenta had stopped working at 30 weeks. 3 months later I found out I was pregnant again, I was scanned every 3-4 weeks and everything was fine. I gave birth to my daughter at only 5cm dilated as she had passed away, they did bring her back though.
11 months later I gave birth again to a perfect health boy. Roll on 2.5 years and I fell pregnant again. This time it was a bumpy pregnancy. I saw my consultant at 32 weeks and told him something didn't feel right. I was booked in the following day to have a c-section, when I arrived at the hospital they had no idea I was coming, so they told me I could stay the night and they would keep an eye on me. The following morning they placed me on the monitor and her face dropped. I was rushed to theatre within 20 minutes KYLE JAMES was born by emergency c-section. He weighed 3lb 25ozs and was barely alive. The SCBU were amazing. 12 days later he came home. When he was 10 weeks old I woke in a panic and found he wasn't breathing. 1 year later I had an ectopic pregnancy and had to have one of my tubes removed. I was told I had 11% chance of ever having another child.
2 years later I didn't feel well so I went to the doctor and was told I was pregnant, I was 8 weeks. 1 week later I started to bleed very heavily. I went to the doctor again and was told I had had a miscarriage. 3 weeks later at another appointment I was told I was 12 weeks pregnant, I had miscarried 1 of my twins. I was in hospital for 4 month on full bed rest when my daughter was born at 32 weeks by c-section. She weighed 4lb 5.5ozs. She was in SCBU again and again they were amazing.
Our little Rosie
Story by: Marc
Little Rosie's mum suffered badly from pregnancy cholestasis, mum's levels where erratic throughout the weekly blood tests, until one day it was "right you're having your baby tomorrow 33weeks plus 5". Rosie's mum, Sarah, didn't show an ounce of fear.
I put on a brave face trying not to pass out in the operating theatre, managed to hold in the tears until that brief cuddle before being whisked off to NICU, not being able to see her for hours. Finally seeing Rosie with that cpap mask was the most unnatural thing I'd ever experienced. The staff looking after these baby's don't get enough credit, the reason I'm sharing this is to get awareness. You never quite know if that next baby in that plastic box is going to be yours.
Our IUGR baby
Story by: Jade
At 31 weeks we found out our baby’s growth had stopped at around 28 weeks, I was immediately admitted and given steroid injections to prepare his tiny lungs for an emergency section. I was on heart medication at the time, which they stopped after realising it was this preventing him from growing (the guilt from this will haunt me forever).
After 4 days he has grown a tiny bit, so I was allowed home after agreeing to daily visits to be monitored. 2 weeks, 14 ctgs and 4 scans later he still wasn’t doing so well. So I was admitted back into hospital to wait for a section. At 33+6 my beautiful baby was born weighing 3lbs 1oz. He did us so so proud fighting every single day. Now a year later he’s still quite small but absolutely perfect.
Matthew Jared 30 weeker
Story by: Melissa
At my 28 week scan they discovered that the flow in the umbilical cord was absent (AEDF). For 18 days I went for checks and scans, until one day on the 2nd May 2020 the blood flow had reversed and they had to deliver him that day. He was born later that day weighing 2lb 8oz. A few days after that they discovered he had a cataract in his left eye which would require surgery at 6 weeks corrected. When he was 6 days old, he was rushed over to Birmingham for suspected NEC and had sepsis in his tummy. It wasn't an easy ride but he defied the odds and left hospital 7 weeks later. He had his operation and removal of his lens and now wears a contact lens and patching to help.
He's now 9 months old actual and although we are having issues with feeding, he's a very happy and content little boy. We are so proud of him and how he fought to survive.
My little miracle Violet Sarah Simpson xxx
Story by: Terri
I got pregnant with my 4th child (from a 1 night stand) by the time I got my head around having another baby, being single again, doing it all on my own, when I already had 3 other children age 9,5,4, I was absolutely terrified. But I decided to go through with it as I'm a true believer in everything happens for a reason. From just before I was 20 weeks pregnant I started bleeding, so i went to the doctors and they took some swabs and sent me to the hospital. Baby was fine strong heartbeat etc all my swab results came back normal, then I found out I was having a girl at my 20 week scan and then from then I was in and out of hospital as I kept bleeding and they didn't know why.
I remember at 1 point they told me that I may have a miscarriage and if I went into labour before 24 weeks they wouldn't be able to do anything. I was absolutely terrified and it was awful leaving my other kids. I was in hospital, even on bed rest, I kept bleeding on and off. All I remember was I kept thinking I just needed to get to 24 weeks so my baby has got a chance to survive. Anyway 2 days before I went into labour, I remember feeling like my bump dropped (I was walking to school to get my daughter) and then when we got home I was bleeding again, but this time it felt different. There was a lot of blood, so I rang the hospital and I went in again. They did swabs, babys heartbeat was strong then the doctor told me I had to have the steroid injections to help babys lungs incase I had her early. The next day, Saturday the 7th of July 2018, all I remember was watching England football match and sleeping on and off. I had stopped bleeding, so i was hoping I could go home on the Sunday as I missed my other kids so much.
Sunday 8th of July I remember at tea time my back was hurting so much, so I just tried to sleep through the pain and I started bleeding again and the doctor told me I had lost quiet a lot of blood now as I was 24 weeks 1 day and been bleeding on and off for 5 weeks and that if I lost any more they were going to transfer me to another hospital and may have to have a c section. All I kept thinking all night was no this can't be happening, baby can't come yet she isn't ready to small etc and all I wanna do is keep her safe and go home and be with my other kids.
Then I remember waking up bout 5 am the next day 9th of July 2018 in pain again, so I called for the midwife she gave me some paracetamol and then the doctor came at 6 am and examined me and I was 4 cm dilated. They rushed me into labour ward and I was so scared, but I remember thinking I'm dreaming this it ain't happening this isn't real I must be asleep I'm going to wake up soon. Then my sister arrived after the midwife rang her at 6:50, all I remember is she looked so scared and like she had been crying for a while and all different doctors kept coming in and telling me what they were going to do etc. It still wasn't sinking in and a lady came in with the smallest baby that I have ever seen in my life (and it was still to big for her) and a midwife telling me that she would be put in bubble wrap to keep warm, then my tiny little beautiful miracle was born at 7:10am. I didn't see her properly. All I remember is all the doctors around her pumping her full of oxygen and then they took her away. I didn't see her for 4 hours and then she was transferred to Hull NICU and I couldn't even go with her. My brother took me once the hospital discharged me. I remember being in the car and it felt like it took forever to get to Hull. We had to keep stopping because I needed a wee and kept feeling sick (think it was shock and nerves). When we got to Hull and I walked into that room and I saw this tiny little human, so small laid in an incubator with wires coming out of her and she was on a ventilator 1Ib 4oz, I just cried and walked out that wasn't my baby. I couldn't stay here on my own.
My other 3 babys didn't understand and were 3 hours away, but I did it. It was so hard, every day was different, it was 1 step forward 3 steps back all the time. I missed my other kids so much and when I was back home I missed Violet, when I was with her I missed my other kids. It was so hard but I look back now and it was a amazing journey to see her so small to now and I can't thank the doctors nurses and my sister for being there for us both. I have never or even thought I would go through anything like that in my life. It changes you as a person know one understands unless they have been there themselves. After 104 days in hospital I got to take my beautiful little miracle home on oxygen and that was so hard, and all she did was cry. I was sure she hated me at 1 point and it took me a long time to bond with her, but now I look back and I wouldn't change a thing. My little miracle Violet she is meant to he here. I truly believe things happen for a reason, but I never believed in miracles untill I was blessed with mine ❤️xxx❤️
14 month's old now
Story by: Eszter
He was born at 38 weeks gestation on November 21st 2019. He has serious conditions, but thriving like mad, very determined. He was born at 5lbs, was small but now average height of a 14 month old toddler. I had gestational diabetes and that took a toll on him. He had stopped moving at 37 weeks and at 38 weeks, but he was delivered that afternoon by emergency cesarean section. Also on August 13th I had severe right sided abdominal pain from 6 pm till 11 pm. When the ambulance rushed me to hospital, they couldn't get to the bottom of what has caused that to happen, so he was born on 21st of November 2019 and was a rainbow baby.
As I delived him in Belfast, my mum and sister was burying my grandfather at that same time, and there was a beautiful rainbow was bitter sweet I suppose. Had lost too many loved ones and don't know what state I would have been in if I didn't have my wonderful son with all his conditions. It has not stopped him from doing what he loves, he's got kyphoscoliosis, a neural tube didn't close over before his birth so his some membrane pertruding through the right side of the head, duplex kidney tubes, his ptosis, and few others.
My first daughter
Story by: Llyn
I gave birth to my first daughter at 27 1/2 weeks after having a breast lump removed at 25 weeks pregnant. They kept giving me Pethidine and Omnipon every night although I had no pain just contractions. I went into premature labour the night they gave me something to make me go to the toilet. They said she didn't try to breath although she was born alive. I think because of the medication I was given, she was probably half asleep. I didn't even see her but I don't ever forget. It was in 1973.
Noel James Russell
Story by: Jennifer
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!
Genetic prem babies?
Story by: Valerie
My daughter was born 12 weeks early in 1963. I wasn’t allowed to see her, but I crept to the neonatal unit to try and sneak a peep when she was two weeks old and got a rollicking from the autocratic matron.
She was fed in the excess milk from any mother in the unit as I didn’t make any. She was five weeks old when I was ‘allowed’ to see her. Two years later I was confined to hospital for three months whilst they prevented her sister from being born 12 weeks early. I had gone to the antenatal clinic and they told me I was in labour, but I was unaware of it so their intervention was early and the baby went full term.
When my first daughter grew up she also had her first baby 12 weeks early, but her experience was so different as she was encouraged to bond with her daughter from birth. She couldn’t make much milk but the baby girl wasn’t allowed other mother’s milk. Luckily my other daughter had a baby at the same time and her milk was abundant so she would express for her tiny niece which the mother delivered as her own! My eldest daughter had a second baby two years later who was 14 weeks early. He had lots of problems, a stroke at birth, a perforated stomach ulcer at 12 hours old and then an infection in his PTN line. His whole tiny body, all 1lb 11ozs of it was bruised, he looked like a little black slug. They said he would be physically and mentally handicapped. How wrong could they be. Both of my eldest daughters two children have grown up with good careers and both have healthy children of their own - all full term.
My prem twins ❤️
Story by: Jessica
I had my twin girls at only 28 weeks. One was 900g and one was 1kg exact. It was the hardest experience in my life. One was delivered naturally and one through C-section. After two weeks of giving birth one of my daughters had gotten ill with meningitis. I thank god my babies are completely healthy and soo clever ❤️ My babies stayed in the NICU ward for 10 weeks until I was able to take them home. It was the most traumatic experience but I am so thankful for my beauties and love them more than anything in the whole world ❤️❤️❤️❤️❤️ I can never be thankful enough for the amazing care and support in James Cook Hospital. ❤️