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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. ❤️
Our 29 weeker, Ava
Story by: Emma
Hi, my name is Emma, a healthy 26 year old who just a year ago had the shock of my life, when my partner Sam and I welcomed our 2lb 9oz daughter in to this world 10 weeks early.
The 30th October 2019 was the scariest yet most wonderful day of our lives; we waited all day but that evening we welcomed our little princess in to the world to the song lyrics "I want to be where the people are", from Disney's Little Mermaid song "Part of your World", and my goodness weren't those lyrics accurate. We were forced to deliver Ava via c-section at 29 + 6 weeks because just 5 days before it was discovered that I had developed pre-eclampsia. I hadn't a clue until blood test results confirmed I needed to attend hospital, my health went down hill so quickly and before we knew it we were faced with confirmation our unborn daughters health was taking a hit and there was no choice but to get her out.
Ava was our little fighter right from the start, she came out screaming and with in the first 24 hours she had to be sedated because she was fighting against the ventilator that she needed to keep her alive. Ava was born extremely anemic, jaundice and she had a PDA which thankfully responded really well to treatment. After 6 days Ava was able to move from ventilation to vapotherm, which is a much less intrusive breathing support and she stayed on that way right up until she was ready to come home. After a week of waiting and 6 days of being able to see my daughter, as I had to wait 24 hours after she was born hooked up to machines and drops before I could see her, I finally got my first cuddle. Holding our precious little girl skin to skin on my chest, in complete shock that this tiny little baby was actually mine.
I was discharged from hospital when Ava was 9 days old and it absolutely broke us, it's so unnatural to give birth and come home with out your child. We travelled 80miles to and from Tunbridge Wells NICU everyday to make sure we were with our little girl. Everyone we met were absolutely outstanding at what they did but we were just living in a little bubble, everyday we wanted to curl up in a ball and cry but some how we got up with out fail to be there for our poorly daughter.
The stress and pressure of the travel was extremely difficult and we were fortunate enough to be able to transfer hospitals to be closer to home when Ava was 20 days old, from there Ava just kept growing and getting stronger. We sat by her incubator day in day out, reading books to her and singing songs. We'd tell her about her family and friends and all the wonderful things that life had to offer.
Ava's health seemed to be improving but very slowly, doctors attempted to move Ava from vapotherm to oxygen therapy but it was just too much for her and it was soon discovered that Ava's iron levels were way too low. She was given a blood transfusion at 5 weeks old and we couldn't quite believe the difference this made to her. Ava really picked up and started to fight back, almost instantly and on Christmas eve Ava made a successful move on to oxygen and was able to where clothes for the first time. We needed to be torn in two for Christmas day, it was so unbelievably difficult. We spent as much time as possible with Ava and spent the rest with my step children and other family but it felt like a piece of me was missing and it broke my heart not having Ava home for our first Christmas together. I saw the new year in with Ava in my arms and cheersed the nurses with a cup of Schloer, wishing for a positive year a head of us and hoping Ava would be home with us soon.
We had been staying at the hospital for a couple of days to established feeding as Ava was struggling to breast feed at first, but on the 4th January 2020 we finally walked out of the hospital with our beautiful little girl who then weighed a much better 5lb 1oz. Ava was diagnosed with chronic lung disease and anemia prior to leaving hospital so she came home on home oxygen and daily doses of iron, which came with its own stresses but none of that mattered walking out of the hospital with our wonderful Daughter. Coming home on oxygen meant that Ava was classed as having a disability and was vulnerable, so we couldn't flood our home with family and friends like we'd hoped to but one by one all of Ava's huge family got to meet her and have their first cuddles and we had to take extra care to protect her. We returned to hospital monthly with Ava for her to have injections to protect her against bronchiolitis and we have had two hospital stays since, one for severe reflux and the second for a horrible scare of meningitis, which thankfully turned out to be a viral infection.
Through the national lock down, we continued to shield Ava and we started the weaning process to get Ava off of oxygen therapy. She done so well, first she weaned off of it during the day and then in June this year Ava got the all clear that she no longer required oxygen at all!
The months have flown by since Ava has come off of oxygen and it has given her the freedom and space to grow in to such a wonderful and cheeky little character. She still has her health complications but day to day she continues to grow and fight back against the rough start she was dealt. A couple of weeks ago Ava turned 1 and looking at her now you would never know the trauma our little girl has been through, she is such a wonderful, independent and strong little girl. We wouldn't wish this experience on our worst enemies but we our so blessed to have our daughter, my absolute life line and our little fighter, Ava!
Twin girls born during covid 19 at 25 weeks
Story by: Victoria
Hi everyone I wanted to share my story. My twins girls Daisy and Lily where born at 25 weeks on the 29th June 2020 during covid 19, the most scary time of my life going to my local hospital for them to say I was getting tranfered to Manchester. Anyway I had Daisy at 22.29 weighing 1lb 6oz by vaginal birth. I couldn't see her as there was lots of doctors and nurses around them. The next thing I know is I'm getting told I'm getting rushed to theatre as Lily was transverse. She came by emergency c-section at 22.51 weighing 1lb 4oz.
Both girls spent 8 weeks in Manchester before they finally got to come back to our local hospital. Everyone who looked after my girls are true superhero's. If it wasn't for them I don't think my girls would be here today. Daisy spent 108 days in hospital and finally came home, but on home oxygen, she's doing amazing. Lily came home after 88 days in hospital. They are true fighters, they have both been through so much in such a small space of time, but I'm so proud of them x
My Beautiful Valerie Mary
Story by: Helen
In 1965 I was pregnant with my second baby, due in August, but sadly I ended up with Placenta Previa again & was confined to bed for the whole of my pregnancy. At 6.5 months, on the 19th May 1965, I was rushed into Holles Street Hospital, Dublin & was told by my obstetrician Professor De Valera that I was losing my baby. On 21st May Valerie Mary was born weighing 2lb 3oz with a mop of black hair, so tiny but perfect in every way & was taken straight away to an incubator on the special care baby unit. During the next two days she was given two transfusions & Prof DeValera told me not to will her to live because she was so premature & could have brain damage. Seeing her looking so perfect it was heartbreaking to realise she wasn’t going to live. Sadly Valerie only lived 3 days & on 24th May 1965 she passed away.
You never ever get over the kids of a baby/child & I’ve thought about her every day for the last 55 years & wonder would she look like my first daughter Angela who is 56 or my son Derek who is 52.
Story by: Natille
My daughter Faith, born at 28+5, will be 3 in September. Normal labour, normal pregnancy. Faith has a form of dwarfism and has a lot of on-going appointments. Faith was 3lb when she was born.
Story by: Belinda
38 years ago I had my daughter at 24 weeks pregnant. The junior doctors where talking over her, saying this is a typical premature baby, seemed like they were talking for ages this time could of possibly saved her life. She was transferred to a neonatal hospital, but she gained her tiny wings on the way. She only lived for 1 hour. In my heart I couldn't bury her, so the hospital put her in a communal grave with 3 little boys.
It took me around 30 years to find her because I kept saying to myself maybe it was a mistake and she is out there somewhere they've given her new parents. I looked for years. I didn't know where she was buried, didnt know where to look, but then I thought I'll ring the cemeterys close to home. I gave them all the information I had and I found her after 36 years. When I got there I couldn't find the grave, I sat crying, I'm so close to her but walked up and down for ages, then sat crying. I was going to give up, but then a nice lady asked me if I'm ok. I said yes but I wasnt. The next day I went again thinking I will find her. The gardeners where there, I asked them if could they help me, he looked on computer and there she was, so I walked to where he told me but there was nothing with her name but there was a grave with a boys name on it. I went back said I can't find it, he came and looked and yes this was her grave too.
There was no name for her, nothing, I've tried to put a little something on there for her, but can't do to much as I've been told I have to have permission from the other parents to do it, but at this time I'm just trying to tidy up her grave maybe do some white small stone. I have some glass wings on there with her name on but it doesn't feel complete, I need a sign to say if I should leave her there of move her alone such a hard dession, even though I've gone on to have more children they were all premature babies and they all lived I can now talk about her, but it still hurts. But I say to people never give up the baby neonatal units a much better than what they had years ago, my baby TAMMY is always in my heart and I will meet her one day xx
Story by: Michelle
My son had stopped growing twice while I was carrying him, and my blood pressure was high due to being stressed. I was admitted to the hospital at 35 weeks. I thought I was going to have him at 35 weeks. Luckily, I managed to make it to 38 weeks that when my son born due having no fluid round him and he was supposed to be born on the 30th of April but he was born on the 9th of April by c-section because he was breech and he weighs 3lb 5oz and he was rushed to the scbu until he was strong enough to be moved.
Story by: Lynn
My son Gary was born at 25 weeks. With an occipital encepholocel. Which he had removed when he was 12 days old. Hydrocephalus - has a csf drainage shunt fitted. Cerebral palsy. Spina bifida. Deaf in one ear. Dorsal stream disfunction. Severe learning problems. No balance or co-ordination. Can't walk well. When he was ready to be discharged, we were basically told to enjoy what time he had. He wouldn't see his teens. He'd be a vegetable. As I said he doesn't walk well. He has no short-term memory. He constantly talks and will always remember at some point. He's my pride and joy. Went to school. College. Art classes. He will be 24 this year. Proved everyone wrong xx there's always hope xx
8 weeks early
Story by: Amanda
My daughter was born 8 weeks early with me suffering pre-eclampsia. It was very scary but I can't thank my hospital enough. My daughter was 2lb 14oz when she arrived. There was no big cry out but a small noise. She was in taken straight to the neonatal unit. I could only see photos to start with, and only got to hold her when she was 4 days old! But she is now a healthy happy 12 yrs old girl.
8 weeks early
Story by: Amanda
My daughter was born 8 weeks early with me suffering pretty eclampsia. It was very scary but can't thank my hospital enough. My daughter was 2lb 14oz when she arrived. There was no big cryou but a small noise. She was taken straight to the neonatal unit. I could only see photos to start with and only got to hold her when she was 4 days old! But she is now a healthy happy 12 yrs old girl.
Ryan Lee John Lewin
Story by: Rosemary
My son was born 30wks. Died aged 2 days. Had a brain bleed. He weighed 2lb 9oz. At 26 wks a scan showed trouble but had further scan - said normal. Blood test came back saying Downs. My son was born perfect. When I was in labour, the hospital thought I needed the toilet, that's all. Then his head came out. Ran 2 flights of stairs with him to ICU. Don't suppose not having oxygen ready for birth didn't help situation. That was 25yrs ago yesterday. Was just sent home.
Matthew My Son Now With The Angels
Story by: Lynda Kathleen
My son was only 3 weeks early, but was still born. He was born in 1976 and in those days not a lot was known about pregnancy in diabetic Mums. I had to deliver him by C section and never saw him but was told he was perfect at 8lb 8ozs. They told me a post mortem was performed on him but never had the results. My ex-husband held him after he was born. It’s too late now to find his cause of death. I still think about him, and wish I could have held him just once because he was part of me for 37 weeks.
Our very early surprise fighter!
Story by: Lucy
At 25 weeks I went into unexpected labour (I thought I had very bad trapped wind) after going to the hospital in agony. They thought I had a urine infection and after tests came back all clear they decided to do an internal. After a look of a very concerned face, I was told that they needed to get me to a delivery suit. Absolutely terrified, they rushed me down and told me they would do everything they could to try and save the baby, but the chances weren't good. They said they may be able to stall the labour. They gave me an injection and said they would check in an hour as they may be able to stitch me. However after an hour this baby decided now was the time to arrive.
With my partner and now my mum at my bedside and my very worried Dad waiting outside, a team of around 15 doctors, nurses and midwives were there waiting for the baby to arrive. They told me not to worry and that I wouldn't hear the baby when it arrived but they would do everything they could. After a final push, my baby arrived and we heard the tiniest cry ever, but it was a cry!! Weighing 1lb 14.4oz our beautiful baby boy was here. He was whisked away after being ventilated. A few hours later we were allowed to go and see him. He was perfect. He had many hurdles along the way in his NICU stay, he suffered with NEC twice resulting in 39cm of his bowel removed, he got sepsis making him hideously poorly and he had real trouble gaining weight, especially after having a stoma bag. There was so many ups and downs through his stay, but we remained as positive as we could, as this tiny baby just fought all the way.
We spent a total of 128 days in NICU before we were finally allowed to bring him home, though the hospital started to feel like home and we really missed it when we went home. However Ralph is now thriving and recently celebrated his 1st birthday. He is the happiest little soul I've ever met, and he makes me and his Dad proud EVERY day.
Life long disability
Story by: Elizabeth Joan
I was born prematurely at 34 weeks and suffered a lifelong physical disability. That was 78 years ago when there was no NHS and incubators to provide intensive care treatment. A lack of oxygen to the brain had caused the physical impairments and had these services been in place the disability wouldn’t have happened as I was born “normal” weighing 6lb 3oz. As a consequence I had a very troubled childhood and adolescence with no outside support that caused me to suffer anxiety and depression and a prescription drug addiction for ten years. I had no definitive diagnosis of the physical disability until I underwent a brain scan at 53 years old that showed a brain injury.
At 20-years-old I underwent two pioneering osteotomy operations to correct/straighten a severely dislocated hip and fixed knee. The surgery left me extremely weak and slowed me down considerably while all my friends were moving on with their lives. I was left behind as a lifelong spectator to other people’s lives, an experience I wouldn’t wish on my worst enemy.
Story by: Lindy
My daughter Emma was born at 28 weeks. I was staying at my in-laws for Easter & was rushed to hospital from Hawarden to Chester hospital at 11.00 am, through Saturday morning traffic - I thought I had a kidney infection. The dear paramedic was very young & had never delivered a child before. He was as white as a sheet & looked terrified! The G.P. followed the Ambulance & told the driver to stop if my waters broke. Our daughter was born within 10 minutes of reaching the hospital. I was taken onto a maternity ward & our daughter was taken straight to intensive care in an incubator. She weighed 3lb 4 ozs.
The sister on the maternity ward that evening sat on my bed & told me not to think of my daughter for 3 weeks - when she may have a chance of making it. The next morning two doctors stood at the bottom of my bed & told the sister to issue tablets to stop my milk from coming through. My husband arrived mid morning & found me in a sad state. I told him what had been said. He immediately went to find a wheelchair put me in it & told the staff that he was taking me to see our daughter in the intensive care department of the nursery. I was able to look through a glass window & her incubator was just beside it. She had a disposable nappy on with 2 tiny feet at the bottom & it came up under her arms. She had a couple of tubes, one helping her to breath as her lungs weren't properly formed. An Irish nurse was sat beside her..she flicked her ear & said breath Emma, breath you little bugger..with much love & attention! She stopped she said every 48 seconds for the first 48 hours. They had very little equipment. Her weight dropped to 2lb 12ozs but she made it through..it took 3 months. We visited every day.
Our biggest scare came when we found her incubator empty - but my husband spotted a crib with 2 little feet in the air & he said there she is, that's our girl...such a moment, from despair to joy.. & to the first time I held her. Her wrist band fits around my little finger. She now has a daughter of her own Chloe, who is 28. I have been a diabetic for 63 years.
I have had 2 premature births
Story by: Gemma
I had a premature birth 9 years ago, with a little boy born at just 30 weeks. He weighed 2lb 8oz. He spent 6 weeks in intensive care and then came home. He is now coming up to 10 and is doing absolutely fine. I had another premature birth 2 years ago at 32 weeks with another little boy. He weighed 3lb 9oz. He was very poorly and we spent another 6 weeks in hospital. He was also born with the hsv 2 virus so we have spent countless nights in hospital since but he is 2 next week and is also doing well. I have 5 children in all - 2 boys both of which was prem and also 3 girls. I am currently 5 months pregnant with my 6th child who is also another little boy - as you can imagine, I am very apprehensive as my boys have all come early but what will be will be. My boys are doing very well considering what they have been through. It is a very scary and horrible thing to go through, having a premature baby, but the outcome can also be amazing. I have so much sympathy for anyone that has been or is currently going through this. My heart goes out to everyone who has been there and not had such great outcomes. I am so glad that Born Too Soon are here to help people and share other people’s stories - it’s fantastic.
Little miracle amelia
Story by: Emma
Hi am emma I'm now 27 years old. I had cervical cancer at 25 just before my 26 birthday in October 2018 I got the all clear I fell pregnant in the November/December. When I went to the midwife I was told to not get my hopes to high as I may not reach 12 weeks. I got past 12 weeks and prayed, as long as my baby stayed inside until at least 24 weeks then she will have a chance. I had early scans every tuesday. At 22 weeks I was given a test to see if I l'd go into labour early, it came back a small percentage that I'd go early at 27 weeks. I started leaking fluid, I went to hospital all fluid was away. I was kept in for 4 days then discharged. The same day of being discharged I went back as my baby was on her way. After 18 hours of natural labour Amelia was born pink and healthy and screaming at just 28 weeks. Everything was going great, she was proving to be a proper fighter, but sadly just 3 weeks into Amelia's fight she contracted NEC necrotising entercolitis a bowel/ gut disease. Alot of babies survive, but also a lot sadly die too. I was told to take it day by day and after 14 days of antibiotics my baby started showing signs of recovering. She fought off that horrible disease and after 7 weeks in Edinburgh Simpsons nicu, where the staff are super heros, Amelia finally came home. Amelia had rsv in December and spent 2 weeks in Edinburgh sick kids icu and hdu, but has been healthy since and is looking forward to her 1st birthday on the 23rd of May x
Awareness For Kody
Story by: Brooke
Kody was my third baby, he was born in 2016. My first baby was born at 38 weeks, my second baby was born at 33 weeks due to pre-eclampsia, my third baby was born at 27 weeks plus one day due to pre-eclampsia and my fourth baby was born at 36 weeks plus 3 days due to pre-eclampsia, she also has a heart condition. My third baby, Kody, was born at 27 weeks plus one day due to me suffering with pre-eclampsia. He was on numerous breathing support and spent all his life in intensive care. Kody was transferred to Great Ormond Street Hospital to see if he had an underlying condition as he needed so much support breathing but he didn’t. His lungs were one of the worst cases doctors had seen, they were on the end of the worst scale. Kody had extremely severe chronic lung disease. Kody’s lungs were so undeveloped. Kody eventually got transferred to The Royal Brompton Hospital and had a tracheostomy. Kody’s lungs were so bad they started putting pressure on his heart, causing him to have pulmonary hypertension. At 7 months old, Kody lost his battle
My premature baby girl
Story by: jade marie
Hi, my name is Jade Marie and I fell pregnant back in January 2017. Everything was running smoothly up until I turned 23 weeks. It was then I started losing fluids, and my mum had to rush me to hospital at 24+3 as I had a bout of reduced movements but as soon as they listened to my little girl's heartbeat, they said everything was fine. Then 2 weeks later my mum had to rush me back to the hospital as I had reduced movements again, but also back pain as well. But with only being 26+3, they could only listen in on the heartbeat but with my little girl being fine they still said I was peeing myself and said it was also discharge with me having extra hormones in my body. So I thought ok, I trust you guys, so off home I went. I then went for my glucose tolerance test and my 28 week scan where I was then told my placenta didn't look right but that it didn't affect my daughter at all so I thought ok good, I could breathe again. I then got home, had something to eat, took a quick bath and went to bed. I wasn't feeling well but was still having to visit the hospital that I'd transferred to on a daily basis to be hooked up to the monitor due to having reduced movements. I then got to 29 weeks and by this point I knew I had severe pre-eclampsia, yet nobody was listening to me so I took myself to hospital and told them that they needed to admit me as I knew something was wrong. Well, little did I know that I did indeed have severe pre-eclampsia to the point my little girl was then born by emergency c-section, 11 weeks early weighing 895g (1lb 15oz) and she battled through a bleed on the brain and sepsis too. She still has her issues with her ears and her legs and muscles within her legs and ankles too, but she suprised us all by only spending 6+2 days in NICU. Well, that was nearly 3 years ago and she still to this day surprises me with everything she does and I coudn't be any prouder.
My angel baby
Story by: Rachel
I went into labour at 28 weeks. Everything was fine before - I had close scans due to having previously had three miscarriages. Luckily I had a boy with help of my gynaecologist giving me suppositories - these are to help a pregnancy. With my girl, I was refused as I already had my boy but I knew I needed them, but the hospital still refused. On July 14 2015, my waters broke and I went into laboour. The hospital tried everything when she came but sadly she grew her wings. Then in 2019, I became pregnant again. I didn’t know what I was feeling. I was worried something was going to happen on a daily basis. I ended up with the suppositories that I had with my boy. My girl was born at 36 weeks due to pre-eclampsia which was life-threatening as my blood pressure was 150bp so I had to stay in hospital from 32 weeks onwards, and I had weekly scans monitoring up to having her. I got a rainbow baby and she looks like her sister. She was born 6lb 12. I am so lucky.
Fletcher’s Neonatal Story
Story by: Rosie
Fletcher, our little boy, very clearly wanted to make an entrance to the world and wanted to make it a dramatic entrance. I was 23 weeks pregnant when labour started when I suddenly haemorrhaged and went to MAU at Royal Stoke where I was quickly rushed to the delivery suite and then, at 24 weeks + 4 days, 105 hours of active labour and Fletcher arrived weighing 705grams, less than a bag of sugar. It was the most anxious moment when he was born and he was rushed over to the Neonatal Staff in the delivery suite, we didn’t hear a sound from him, desperate to know whether our little boy was going to be okay, luckily enough we saw one nurse smile, which gave us confidence that he was alright. He was resuscitated at birth and then put on the ventilator straight away (life support) he was rushed off to the Neonatal Intensive Care Unit at Royal Stoke straight away without a hold or a cuddle. When we first started our Neonatal Journey, we were quite naive to the journey Fletcher and ourselves would have to go through, just thinking our tiny baby needed to grow, we were told to expect a rollercoaster, and we did not understand the rollercoaster our Fletcher would be subjected too because he was born too early. Our little miracle has battled through multiple infections on multiple occasions such as sepsis, pneumonia, E-Coli and NEC. He has had a grade 2 brain haemorrhage. He has had half a collapsed lung since he was born which constantly needs inflating and both lungs on the verge of collapsing. He has got Stage 2 ROP. He has an open duct in his heart and POF. He has and will always have chronic lung disease. He has had 18 blood transfusions and has been tested for Covid-19 twice. Also, has a calcification mass in the ligament in between his tummy and liver and terrible reflux. He has now been discharged from Royal Stoke Neonatal Unit on 0.8 Nasal Cannula Oxygen. It’s been incredibly hard, and we couldn’t thank and appreciate all the members of staff at Royal Stoke Neonatal Unit enough, they saved our boy’s life multiple times. Fletcher was ventilator dependant for 57 days, with two failed attempts of getting off the vent, each time more harrowing than the other. He had to have steroids in order to improve his lungs to be able to get off the ventilator. Fletcher then progressed to requiring the next stages of breathing support Duopap, CPAP, high flow. Eventually we were delighted when our little Fletcher finally managed to get on to low flow which gave us hope that home was in sight. We have been incredibly lucky to be at Royal Stoke Neonatal Unit, with the fantastic nurses, doctors, consultants who all help to save our babies lives and progress them to eventually be able to come home. They also not only do medical care but they help with the difficulty of being separated by sending pictures, messages and videos via VCreate which has been such a relief to see our son’s beautiful face every single day whilst we haven’t been there. They have constantly kept us up to date with his care and any plan of next steps. We would have been lost in complete devastation without this when we had to go home, and we had to spend 14 days in isolation without him due to Covid-19. We have had so many critical moments where we have been the emergency, and so many immensely proud moments where we have celebrated. We are amazed at how hard Fletcher fought, how strong he is and was to overcome and battle so much! We’ve cried, sobbed, smiled, and laughed! Little babies are amazingly strong babies, and all the neonatal parents we’ve met are incredibly strong parents.
The words and photos in this gallery posts are written by people who have shared them and reflect their own personal story.