This is the baby story for Forrest – Our Committee Member Heidi’s son.
When Forrest was born, he wasn’t breathing, was completely unresponsive, lifeless and blue in colour. He was immediately ambulanced to the Royal Sussex County Hospital in Brighton where, after an incredible 30 minutes of trying, staff successfully managed to resuscitate him. He was given a 50/50 chance of survival and only a 1/8 chance of not suffering from any brain damage. Forrest’s consultant spoke to us about a new treatment, the ‘cooling technique’ where a baby’s body temperature is reduced to a hypothermic state over a 3 day period, giving the brain time to slow down and repair cells more easily before being ‘warmed up’ again. It was a really difficult time and we felt completely helpless, staying by his incubator, unable to even touch him but incredibly Forrest made a full recovery. Even the consultants were amazed at how positively he responded. Forrest is now a very happy, healthy, funny, loving, thoughtful boy. We cannot thank the Trevor Mann Baby Unit enough for saving his life. They are a phenomenal team and without their expert care and attention, he wouldn’t be here. We are so incredibly grateful and owe them everything.
This is the baby story for Tilly, our committee member Jemma’s daughter.
Tilly was born at 24 + 5 weeks on 28th January 2014. She weighed 360 grams (13oz) when she was born and was the smallest baby that the TMBU had ever looked after.
Tilly spent 143 days in the TMBU and SCBU before coming home. She was at home for 6.5 months, on home oxygen, and did amazingly well – she was cheeky & made us laugh every day.
Unfortunately, Tilly picked up a virus in January 2015 and was admitted back into hospital. She spent the next 10 months in a few different intensive care and high dependency units, but sadly passed away on 1st November 2015 at the age of 21 months following further complications.
We will always remember Tilly as a happy girl with the most infectious smile – even when she was going through the most difficult times, she managed to brighten up our lives with her raspberry blowing & she most definitely lived up to the meaning of her name ‘mighty in battle”.
We would not have had the precious time with Tilly had it not been for the staff at the TMBU and SCBU and we will be forever grateful for that.
This is the baby story for Samuel our committee member Julie’s son.
Story written by his Mum, Julie. Samuel was born at 36 weeks in Worthing Hospital in February 2014 weighing 6lb 3oz. He struggled with various health problems after he arrived and was admitted to Worthing SCBU when he was 5 days old. He was unable to maintain his oxygen levels that night and by the morning he had become acutely unwell – having seizures and sustained episodes of not breathing. He was resuscitated in front of us whilst we looked on helplessly, and then stabilized on a ventilator although his seizures continued and required further treatment. The Neonatal Retrieval team arrived to transfer him to TMBU. The staff were excellent in caring for Samuel (and us) in the turmoil and uncertainty of not knowing what was wrong with him for almost a week. He endured many procedures including a lumbar puncture, cerebral function monitoring, EEG’s and a MRI Brain Scan. They then found out he had a rare form of meningitis and encephalitis caused by the Parecho virus and he was moved to the Royal Alex Children’s Hospital to continue his recovery. Samuel is now a happy and healthy young boy, despite battles with respiratory difficulties and developmental and speech and language delays that are probably the result of his neonatal experiences. He brings us so much joy and we will never forget all that TMBU have done for our family.
Samuel’s story written by his Dad, Jim. In November 2010 I felt like I was catapulted into another world when our daughter was born at 33 weeks and taken into SCBU. I felt helpless and lost while trying to be strong for my wife. The second time in February 2014 was worse with our son as he was admitted to TMBU with Parechovirus Meningitis & Encephalitis. That was a whole different level than before and looking back I don’t know how I managed to hold it together but somehow I did. I faced some of my darkest days in that time but am so grateful for all the staff that were there for us, without them I don’t think I could have coped. For those dads who are going through similar times, you are not alone. Stay strong. There are groups like the EBA and others who can help put you in touch with Dad’s like myself who have emerged through the other side.
This is the baby story for Luke, our committee member Michelle’s son.
Luke was born at 38 weeks weighing 2.14kgs (4lb11oz) by emergency caesarean section, after a normal, uneventful pregnancy. At a few hours old, we were told the devastating news that Luke was very poorly and potentially had a heart issue which would require surgery. He was transferred from The Trevor Mann Baby Unit at The Royal Sussex County Hospital in Brighton to The Evelina Children’s Hospital in London for tests and to see a Specialist. These tests later established that Luke, didn’t have a heart issue requiring surgery but had Intrauterine Growth Restriction which resulted in the complications noted at birth.
Once stabilised, Luke was transferred back to the Trevor Mann Baby Unit for continued care and monitoring. Once he had sufficiently improved, he was transferred to the Special Care Baby Unit at The Princess Royal Hospital in Haywards Heath. After being on a very emotional roller-coaster lasting 15 days, Luke was finally allowed home once his sats had come up to acceptable levels and also having regained and exceeded his birth weight. We returned to the unit every other day for a couple of weeks for weight and blood checks, after which, he was then discharged to be seen as outpatient in clinic. We have had a few health issues since but now Luke is now a happy 9 year old boy.
This is the baby story for Lewy, our committee member Wayne’s son.
Lewy was born in Eastbourne at 30 weeks in April 2007 weighing 3lb, suffering from a blood infection, gut infection, low blood pressure and bleeding on the brain. It took the neonatal consultants from Brighton 6 hours to get him stable enough to take him to the TMBU. He received a blood transfusion on the journey to Brighton. He made a slow but steady recovery until he got an infection on day 10 and stopped breathing, being resuscitated while we watched – helpless! He stayed in the TMBU for 3 weeks receiving the highest quality of care and a further 3 weeks in Eastbourne SCBU. He has been unaffected by his early start, making plans to play professional golf after becoming the youngest player to get a hole in one at the Royal Eastbourne at the age of 6.
This is the baby story for Nova our committee member Lauren’s daughter.
Story written by her Mum, Lauren. In May 2017 my daughter Nova was born at 25+2 weeks gestation. I always knew I had a high risk of premature labour or miscarriage due to having my cervix removed because of cervical cancer in 2015.
However never in my wildest thoughts did I think I would have my daughter 15 weeks early. I had a fairly straight forward pregnancy (apart from being very closely monitored with 2 weekly appointments with my obstetrician) so when my waters ruptured at 24 weeks I was terrified.
I managed to not get an infection during my 5 day admission onto the pre natal ward and had my routine steroid injections to help progress Nova’s lungs in case she was born early, luckily I didn’t go into labour, so when they discharged me I was rather relieved.
I was booked in for an appointment every week to check Nova’s heart rate and my infection markers and had a course of antibiotics to take at home.
3 days later I went to the toilet to see that I was bleeding, off we went back to the hospital. Deep down I knew I wasn’t going to leave the hospital pregnant this time and my suspicions were correct. After a very trippy night on the labour ward (due to a magnesium sulphate drip) I woke up feeling really ill. I had about 3 doctors come into my room and tell me my daughter was going to be delivered that day and to call my husband.
4 hours later I was taken into the operating theatre and given a lot of information about babies born so early, I felt completely numb and terrified by what was about to happen.
Nova was born by Caesarian I’d never seen such a tiny, helpless perfect person.
Thanks to the TMBU Nova came home 1 week before her due date, on oxygen.
I cannot thank the staff enough for looking after my baby and getting her home safely so we could be the family we’ve always dreamed of.
People who started off as Nova’s health care professions soon became lifelong friends.
Nova’s Story written by her Dad, David. A friend of mine said what you’re going through will soon be a distant memory. At the time I couldn’t focus on anything other than the moment I was in.
Now, almost 2 years on, it does seem a little distant. But the memories will never leave. And to be honest, I don’t want them to. From the first moment I saw Nova my whole world changed. Laying there in all I could describe as an oven roasting bag with tubes and wires everywhere was our beautiful 25weeker daughter.
The happy ‘Dad Life’ didn’t start as normal as you see everywhere. But what is normal? My Dad Life has been amazing, the things I saw in the TMBU over the 95 days have been real eye openers. My mental state was tested immensely and it was difficult to know what to say, how to act, what to feel.
It’s drummed into us by society that as a Dad you need to be the leader, to stand strong and keep the family unit together. In times like this it’s even harder. You just want to break down and ask other Dads how they are. But you feel nervous and scared, you don’t want to look weak to the other ‘Alphas’. Then you think. No, this isn’t a wildlife documentary, this is life, we are all emotional and we need to pull together to get through tough times. It took me a while to start talking to the other Dads on the unit but when I did a huge weight was lifted. I urge any Dad who is going through this to just say hello to the others! You’re being strong for your partners and you’re probably hiding your emotions to look strong in front of them. But don’t, just let it out and talk. Cry with the other Dads there, the word beer helps. It’s a good icebreaker. Fancy a beer?
Being a Dad is an incredible feeling. Being a Dad of a preemie is special. They say tough times are given to those that are built to handle them. It sounds weird, but I think it’s a gift.
This is the baby story for Hettie, our Committee Member Charlotte’s Daughter.
On the night of the 30th August 2018, following a normal day and an uneventful pregnancy, I went into labour more than 9 weeks early. After a long night of back pain and no sleep, I called the hospital who invited me in for a checkup and then surprised us by declaring I was 3cm dilated.
I was given injections to delay my labour, so that I could have a series of steroids to help the baby’s lung development. As we had some time to prepare, the midwives arranged for us visit the Trevor Mann unit for a tour in advance of the baby’s arrival. The team on the unit were very kind and talked us through what to expect, showing us the three nurseries, the different incubators & equipment and explaining some of the possible different scenarios of having a premature baby. It was a very overwhelming experience, which left us emotional but reassured and gave us some insight into the reality of what was to come. Before the tour I had thought we would have a short stay in hospital after the delivery, but it was clear now that everything I’d imagined about having a baby was going to change. Six days later, after lots of starting and stopping of contractions, our beautiful daughter Henrietta arrived naturally, weighing 3lb 8. Hettie was immediately whisked up to nursery one, where she was checked, wired up and given a spot by the window. Nothing can prepare you for meeting your baby for the first time in an incubator, but I felt calm and safe knowing what we had learnt on our visit before she was born. Hettie was fortunate to be early but healthy, so it was now a matter of being patient, as she wouldn’t be able to leave TMBU until we had established feeding and she wouldn’t be able to begin feeding until she was at least 34 weeks old.
Three weeks and a day after she was born we were signed off to go home. Those three weeks were the most emotional and challenging of my life, having to leave the most precious thing in the world to you, in the care of other people is not easy, but we couldn’t have been looked after by a better team. We can’t thank the team at the Trevor Mann enough for all they did for us.
This is the baby story for Wren our committee member Fiona’s daughter.
On the 27th March 2018 Wren was born at 28 weeks (12 weeks early) via emergency C-section due to maternal Pre-eclampsia and HELLP Syndrome and Wren having Intrauterine Growth Restriction (IUGR). She weighed 1lbs 13oz at birth but initially coped relatively well and had few issues that resolved quickly. Wren was born In Surrey and due to us moving house she was transferred to a more local hospital but within days rapidly deteriorated and was investigated for various conditions.
On the 24th April at just four weeks old Wren became critically unwell and had suspected Necrotising Enterocolitis (NEC), a potentially life threatening Bowel condition common in premature babies. In the middle of the night she was transferred in an emergency to TMBU, for a higher level of care and potential surgery. She was medically managed for four days by the incredible team on TMBU who thought she had started to improve but then unexpectedly rapidly deteriorated again and we were told the only option to help save her was to go in surgically and remove any dead bowel and hopefully stop the disease form progressing. Still very tiny and very unwell she was taken down to theatre (in the Royal Alexandra Children’s Hospital) within hours and many scenarios were given to us. After an agonising few hours Wren was brought back to TMBU where her Consultant, in great relief told us that she did not have NEC, but had Congenital Intestinal Banding. Wren had been born with a rare band of tissue wrapping wound her bowels creating an obstruction and causing part of her bowel to die. The surgeons removed 20% of her bowel and formed a stoma (an external open opening of the bowel through the abdomen). Though this was a very serious condition and she was still vulnerable, it meant a better recovery. This was also completely unrelated to her prematurity.
After her initial surgery she had several complications including sepsis, apnoea’s, jaundice and reflux, but were managed by the incredible staff on the unit who not only saved Wren’s life but helped us through this very difficult time. Wren had her stoma reversed after 8 weeks and was then discharged home after 14 weeks in hospital and 10 weeks in TMBU. The staff and the unit will forever be very special to us, Wren is now generally a happy, healthy toddler and we will never be able to thank TMBU enough for our little girl.
This is the baby story for Matilda, our committee member Jenni’s daughter.
Matilda was born at 32+4 weeks in September 2015 at PRH, Haywards Heath. She had trouble breathing so was put on a ventilator and placed in an incubator on SCBU. We were quickly transferred to TMBU in Brighton. We stayed there for 8 days before going back to Haywards Heath. She continued to need breathing support and got sent home on oxygen after 8 weeks in hospital. She then spent another 4 months on home oxygen which involved lots of tubes around the house and walking with a ghost buster style oxygen pack on my back!
She progressed very quickly and was off the oxygen at 6 months old. She grew at a ridiculous rate, catching up with her friends born at full term!
She met all her milestones and was discharged by the consultant at 2 years old, with no breathing difficulties or lasting condition.
She is now 4 1/2years old, very tall for her age and enjoying pre school! She loves seeing her friends, drawing and being outside scooting, riding her bike or exploring in the woods! She is due to start school in September 2020.
We are still friends with some other families we met on SCBU and are very grateful for all the staff at the units for all they did for us.
This is the baby story for Ellis, our Committee Member Nicola’s son.
Ellis was born in April 2019 at 25 + 2 weeks gestation. Up until that point my pregnancy was going smoothly so when I started having contractions, I put it down to being some strange cramps and carried on my way to work.
Suffice to say, a couple of days later and after being blue lighted from PRH to Brighton hospital, Ellis arrived naturally and still within the sac.
To this day no one knows why I went into early labour but they suspect it may have been due to an infection in my waters.
Despite Ellis’ prematurity, he was never ventilated, which is unheard of for such a premmie. The doctors dubbed him Viking Ellis as from the get-go, he was so strong and smashed his way through each day.
We soon found out however that out of nowhere things can change in the blink of an eye and that’s when the rollercoaster started. Ellis battled infection after infection and received numerous blood transfusions. It felt like every day was one step forward, two steps back.
Once he hit around 33 weeks there was talk of him being transferred to the Special Care Baby Unit at PRH. I couldn’t believe it when they said he was well enough to go and that once we had his feeding established we were looking to be on the road home.
Unfortunately, after being at PRH for less than 48 hours Ellis was rushed back to the TMBU where it was found he had bacterial meningitis. It felt like our whole world had crumbled all over again and I just expected the worst.
Well, Viking Ellis struck again and after weeks of antibiotics, he was as right as rain. He passed all the tests, showing that remarkably he had come out the other side unscathed and after 96 days we came home!
During his time in hospital, Ellis showed astounding amounts of strength, determination and resilience. Now he is a happy, kind, funny and whirlwind of a toddler, with nothing to indicate his prematurity at all. He truly is remarkable and both Darcy and I are so honoured and proud to be his parents.
This is the baby story for Henry, our previous Committee Member Laura’s son.
Henry arrived unexpectedly early in the summer of 2013. He was a relatively good size given he was born at just 30 weeks – 3lb 11oz – and we hoped he just needed to put on some weight before coming home. However, he developed severe breathing problems & ended up being in hospital for nearly 3 months – 79 days – both in TMBU & SCBU. He endured so many procedures – such as MRI scans, x-rays, blood transfusions, needles in his scalp & was ventilated on numerous occasions, including a midnight emergency transfer back to TMBU from SCBU. He had an operation on his diaphragm which finally seemed to resolve things and since then he hasn’t really looked back – aside from us having to resuscitate him 2 weeks after he came home. He is now at primary school and although the smallest member of our family, he has a big personality!
Maisy & Molly
This is the baby stories for Maisy and Molly, our previous committee member Lee’s daughters.
Our beautiful twin girls Maisy & Molly were born on 29th Sept 2014 at The Princess Royal SCBU at 25 weeks. Both weighed 1 ½ pounds and required immediate medical attention. They were transferred to the Trevor Mann Baby Unit in Brighton. Both were very sick with a number of complications. Sadly, Molly’s complications were too much for her and Molly received her Angel Wings on the 3rd October 2014 at 4 days old. She lives on however in the heart of her twin sister Maisy who has gone from strength to strength with the help of the amazing hospital teams. Her stay on TMBU lasted 127 days, during which time she fought a brain bleed, lung hemorrhage, heart surgery and severe reflux. Just over 4 years down the line however and a few more hospital stays later she is enjoying life with little in the way of signs of her early battle. She certainly has the strength, courage and determination of both her and her twin sister.
Without the love, care, experience and support of the TMBU and SCBU teams my family and I would never have managed to come through our darkest days in the way that we have.
You would never know...
Here is a short video about the incredible work of The Trevor Mann Baby Unit in Brighton, East Sussex.
The Trevor Mann Baby Unit Is a specialist unit caring for premature and sick babies following their birth. The unit has twenty seven cots, nine of which are designated intensive care, eight for high dependency and the remaining ten for special care. Some babies may stay on the unit for only a day, others may be there for many months.
The local health authorities of East Sussex, Brighton & Hove and West Sussex pay for the service provided. However, high quality medical and nursing treatment is very expensive and donations are essential to help buy additional equipment.
The Early Birth Association are registered on Virgin Money Giving,
where you are able to make a donation directly to us and set up your
own fundraising page for any events that you do.
For further advice and support please also see the useful links and information at the bottom of the website.