Bliss Charity – Real Life Stories
When Babipur and Close came together to collaborate on a charity print, the charity Bliss was chosen after a member of the Close team gave birth to her baby daughter at just 29 weeks. Bliss provided amazing support at this difficult time, and work with many sick and premature babies and their families throughout the UK each year.
Our exclusive Superhero print is a collaboration with Babipur and the charity Bliss. Three pounds from every sale goes directly to Bliss who offer support to sick and premature babies and their families. Their goal is to ensure that sick babies have the best possible quality of life and that their families receive the advice and support they need.Close
During the launch of the Superhero print we asked if there were any Babipurian parents who’s lives have been touched by Bliss; the response was both overwhelming and incredibly moving. A huge thank you to all the parents who responded, we have included the stories below from some of the parents happy to share their experiences – you are all Superheroes!
To be honest I had never really come across the charity Bliss until my baby was born at the beginning of this year. I suppose I was naive, you often hear of Premature babies being born poorly and requiring medical intervention but often don’t think of the term babies that are born poorly. I made it over my due date (41+1) but didn’t think anything of it as I was booked in for an induction, when I went in a few days prior due to reduced movements my world was turned upside down, when hooked to the monitor my baby’s heart rate dropped. My little girl Ani was born via emergency c section under general anaesthetic. She was resuscitated at birth and was very poorly.
During her first 24 hours it was unclear whether or not she would survive. She was transferred from Bangor to Glan Clwyd then on to neonatal intensive care at Arrowe Park. Ani suffered HIE (hypoxic ischaemic encephalopathy) and PPHN (persistent pulmonary hypertension in neonate/newborn). At the neonatal unit Ani was the only ‘term’ baby, they are often far and between. The neonatal consultants and nurses gave out Bliss packs with information about conditions, there are also things like milestone cards and a book to read as it is good for parents to read to baby.
Ani spent 12 days ventilated and on the 12th day I finally got to hold my baby for the first time, it was the best feeling! Ani spent a month in hospital before finally being allowed home. Ani is my little miracle baby. Although it is still raw and sometimes hard to talk about I think it is so important to raise awareness of charities such as Bliss, they do amazing work supporting and providing information to parents. I would also like to thank you for raising awareness.
My name is Bethany, I am 23 years old and I have two children. Phoebe, 3 years old and Marcus, 10 months old.I wanted to share my story of relying on Bliss for my sanity and for my comfort in a time of great need.
I always thought Neonatal was for premature babies, never actually pondered on what happens to poorly babies and this is where our story starts.I was very poorly at 39+5, I was meant to have a homebirth and everything was set up ready. I couldn’t shake my fever after 3 days and asked for my midwife to attend to offer some advice. Once she took it she explained I had to attend the local maternity unit ASAP.
Once I got there, within 10 minutes of being shown to an assessment room, they were trying to put a cannula into my arm. I was so upset and shocked, nothing had been communicated and they explained there were prepping me for an emergency C-Section due to being red alerted for Sepsis. I was allowed to labour for 4 hours and if nothing had progressed, then it would end in a section.I hadn’t progressed so I was admitted for a C-Section. Soon I woke up to a very hungry baby boy.
After a few hours we were sent to the cesarian ward with all the other Mum’s and new babies. I was still really poorly and being tested hourly for different things. Trying to work out the cause of my high temperature. All was well for my son for 5 days, on the end of day 5 my sister noticed he was a little blue in the lips. I explained ‘it’s only trapped wind’ and she hesitated, but winded him for me. When she lay him down, she highlighted again that his breathing wasn’t right and she was concerned. I called the midwife, expecting her to agree with me that she was overreacting, but I was proven wrong. Marcus was taken to Neonatal to be ‘assessed’ and I was assured he’d be back up in the next two hours. However he didn’t return. He was then admitted for four weeks. He withstood Meningitis, Sepsis, blood transfusions, 5 different types of antibiotics – one after the other each day. Forever hooked to a cannula.
Trying to juggle a 3 year old and a newborn, trying to stretch myself to express milk and to make sure my daughter felt loved – was one of the hardest experiences in my life. If it wasn’t for Bliss, I’d have probably lost my mind. They offered me counselling, love and support. They reminded that I was doing the best and that my anxieties were just anxieties. Nothing more than overthinking from the hours I just sat, watching my son wake up for a feed. I am very thankful, my son who is too young to know what his feet are – will one day also be very thankful for Bliss keeping me sane, to carry on fighting for him. I am also ever so grateful for Countess of Chester Neonatal and Arrowe Park Neonatal for allowing my son to come away, unscathed from all the challenges he faced in August 2018. Thank you Babi Pur for allowing me to share our story
My twins were born at 26 weeks. One of the first things I did that night was to google survival rates for 26 weekers. 80% survival rate – which may sound ok but when it is your babies, it is terrifying -20% is a huge margin, and someone has to fall into it.
Sadly, we did as we lost our baby daughter Rosie on day 3 of life. I felt so lost and like I was the only person this was happening to. Twins belong together and I had no clue how to feel now I only had one, and he was very sick and we faced the very real possibility of losing him too.
I began to search success stories and stumbled across Bliss and their stories written and shared by other parents who had been through similar. I just needed to find people who had lost one of their twins, and who had taken home 26 weekers. Through the sharing of stories you realise you aren’t alone, that other people have come through it and survived, both with and without their babies.
All the things that you are suddenly faced with in NICU – ROP, NEC, brain bleeds, all the various breathing apparatus – it’s all so alien. I didn’t even know about nec (Necrotising enterocolitis) and yet it is a huge killer of premature babies. All of these things which hit you in the face one after another, you learn other people have faced too through resources such as Bliss which offers clear explanations and real life stories. I wouldn’t wish prematurity on anyone, but have vowed to always share my little twin’s story so that other people can take comfort and hope from our experiences.
Jude is now 3 and doing absolutely amazingly well. We miss Rosie in everything we do, but I feel so grateful that Jude was able to stay; he means the whole world to me. He is also the reason I found Babipur, as I couldn’t stand gendered clothing once we had lost Rosie, and also because after such a horrendous start to life and then coming home on oxygen, I wanted to dress him in bright clothes and celebrate him. His bright outfits became the first thing people noticed instead of his tubes, and are now definitely a part of him.
Having a premature baby turns your world upside down. Having had a baby at term a few years previously, it never entered my mind when I was next pregnant that I may give birth prematurely.
As a bit of background, after a pretty rough birth with my first (emergency section), I’d been reassuring my husband that the birth would be better this time as I’d either have an elective section or if we tried for a natural birth that they’d intervene sooner if need be so things would be less of a rush if I did end up needing a section. How different things turned out.
We moved house on Friday the 8th and I thought I’d perhaps overdone it with the stress of the move so I was getting braxton hicks. Two days later we were out having lunch for my husband’s birthday and I realised that they were happening regularly and close together so thought I should get checked out. My husband questioned if I was in labour but I was only 28 weeks pregnant and I honestly did not believe for one moment that this was labour. You never think premature babies will happen to you, especially when there are no warning signs during pregnancy.
When we got to the hospital at about 3pm, I was told I was in labour and the local hospital doesn’t usually deliver 28 week babies but the labour was already too far along and too risky to transfer me. Being told my baby was coming that day when I had a whole 3 months left of my pregnancy was hard to comprehend. Unfortunately I needed a crash section due to my uterus fully rupturing and losing my baby’s heartbeat. Thankfully the amazing doctors and nurses at the hospital saved us both and took outstanding care of us until we were transferred to another hospital.
It was a lot to process after the birth that we had a baby, that he was so so tiny but that he was fighting. It didn’t feel real. We went to see him before he was transferred but were scared to touch him for fear of hurting him. I had to wait another day for a transfer myself to the same hospital.
When we went up to see him there, it was like walking into another world. Everything was new to us and pretty scary and we felt so helpless. There was not much we could do for our tiny son and we felt awkward and self conscious just staring into the incubator at first. I set my mind to trying to express as much milk as I could and that was my way of helping him.
In addition to this, we had a 3 year old son at home, over 2 hours away from the hospital. He was upset that his mummy had just disappeared and not come back. Due to the nicu policy, he couldn’t meet his baby brother until we were transferred to a hospital slightly closer to home where the SCBU allowed siblings of any age to visit. It made it harder to explain it to him when he just has to take our word for it that he had a baby brother. He was so good with it all. It was still 1.5 hours from home so I stayed in hospital accommodation all the time our baby son was in hospital, which I was very grateful for but I felt torn between my children and I missed my older son growing up.
It was a daily roller-coaster of emotions. A daily roller-coaster of our baby’s condition. I was surrounded by amazing and (and with only 1 exception) friendly medical staff but it still felt so lonely. My husband couldn’t visit often as he was at home looking after our older son and being his rock. I learnt so much about premature babies, medical terminology and what all the machines meant and when the alarms went off if it meant anything bad and waiting for the numbers to pick back up by themselves and knowing what to do if they didn’t.
We were encouraged to help care for our babies and as they became bigger and stronger and had less breathing support, we could start picking our own baby out of their cot for a cuddle without having to ask for permission and for help from a nurse. Such a special time when you could have cuddles with your baby as and when you wanted found it very hard going outside the hospital and seeing a pregnant woman or a newborn baby. I wanted a badge to tell everyone that I was a new mum, I wanted to shout that I had a tiny baby and I wanted everything to be normal. I grieved for the loss of 3 months of pregnancy, I had loved being pregnant and knew I could never be pregnant again, I wanted to be able to show my baby off to the world. I also felt so lucky to have a baby who was alive and fighting, who I felt sure that one day I’d be able to take home, however far in the future that may be. Then I’d feel guilty for feeling jealous of other heavily pregnant women and I should be more grateful that my baby was alive.
9.5 weeks after Arlo was born, the day we’d dreamt of arrived and we got to take him home (delayed slightly by a couple of hours’ wait for a parking space in the hospital car park!!) . We’d managed to get breastfeeding established and he’d managed to ditch any form of oxygen or breathing support. The hospital’s outreach team supported us once home and our health visitor was happy to ask for advice from the neonatal team so that everyone was on the same wavelength. Arlo is now doing fantastically. He may not be walking independently yet or talking much but as with everything else in his life, he’ll get there in his own time.
My pregnancy was pretty straight forward in the beginning, that was until we reached 23 weeks. I went into the hospital as I could tell things weren’t right. There I was told by the doctor “I’m sorry your waters have gone, you’re most likely to labour now and your baby won’t survive”. I was numb with shock, how could this be happening, my baby boy wasn’t due until October and it was June at this point.
The next few days were a blur as I had an infection and the advice was to induce labour and hold my baby if he was born alive. I knew his chances of survival were not great so I continued with the pregnancy. Unfortunately things got a lot worse, I was on bedrest but only managed 3 days at home after lots of heavy bleeds, at 27 + 5 I got very sick as I had contracted sepsis.
My son was born via emergency c-section under general anaesthetic. I didn’t meet him for another 14 hours. He was so tiny but perfect, 10 days later I held my baby boy for the first time and that’s when he really felt like mine, all the machines beeping and wires everywhere but all felt calm when he was placed on my chest.
I focused my attention on expressing milk, I felt pretty helpless so this made me feel a lot better knowing I could do something for him. I did this every 2 hours day and night to begin with. The NICU journey is a huge scary rolla coaster, at times it felt like 2 steps forward and 10 steps back, but my boy was strong. He came home at just over 10 weeks old on home oxygen.
Of course our journey didn’t end there and is still continuing a year on. We had three appointments a week at one point which at times felt exhausting, I just wanted to shut the world out and spend time with my boy, all that time missed when he was born.
All that seems like a lifetime ago now, I’d dreamt of holding my boy whenever I’d wish and here we were soaking up all the cuddles. I am so thankful for my boy and the amazing NICU team who saved his life, he is one years old now, happy and thriving.
I was admitted to hospital after my 30 week scan due to high blood pressure, and proteins, they thought they had controlled it with medication but my proteins continued to rise over the week. Before I knew it I was being transferred to another hospital (our local hospital doesn’t take women before 37 weeks this is Bronglais Aberystwyth) 2 1/2 hours away the Royal Gwent in Newport. Fast forward to 32 weeks and 6 days our daughter was born on the 13th April 2018 via c-section semi emergency at 10.48 am weighing 3lb 7oz.
We had a couple of scares to start with thinking there were complications with her stomach however she was strong enough to over come these problems herself. On the 24th April we were transferred to a hospital closer to home (Glangwili Carmarthen still 1-1 1/2 away) but it meant we were one step closer to home. All that was left was for our baby girl to do was learn to feed. On the 5th may 2018 we were allowed home. We couldn’t believe it our tiny baby born 3lb 7oz was going home at 4lb 4oz.
I found the bliss website very useful during and after our stay in Nicu and appreciate all the work they have done and are doing to help parents of sick or premature babies.