FEED1 Stories
As a team, we believe that our engagement with the families who participate in the FEED1 trial is really important. We would love to hear any stories or feedback that you may have regarding your FEED1 experience. Please use this link or email us at feed1@nottingham.ac.uk to share your experiences.
Stories
I initially went in to preterm labour at 30 weeks and when we were counselled by the neonatal team they discussed the FEED1 trial with us. Fortunately we managed to continue the pregnancy until 32 weeks when she made a very speedy arrival by cesarean section weighing 3lb 8oz. Dr Ojha was there at the birth and asked us if we would like Daisy to be part of the trial. Knowing how important research is for newborn babies, after already having a preterm baby in 2021, we didn’t hesitate to consent.
She did incredibly well and needed very little medical intervention. After 3 weeks we were discharged home with her fully breastfeeding. She’s continued to thrive and now at 4 months old she’s a fantastically chunky 10lb 9oz.
The FEED1 research team have been great and we got lots of extra support in hospital. Research is how medicine evolves and develops and we’re proud to have been a part in shaping future care for premature babies. |
|
When Dottie was born at 30 weeks and taken to NICU, we were given the opportunity for the FEED1 trial. At that point we agreed as we wanted the very best for Dottie. Dottie instantly started to gain the weight she needed in order to grow bigger and stronger. She was fed more milk more frequently in order to gain the weight expected and she did! It was a fantastic trial and one we are very pleased we took part in, we consider the trial a huge factor in Dottie’s growth and development. She left hospital 3lbs 9oz bigger - she’d gained that weight in 6 weeks.
She is almost 3 now and thriving. She was breastfed for 27 months and is above expected height and weight for her age. The FEED1 team do an amazing job - thank you! At first it was really daunting but we soon realised the positives of the trial we knew it was the right decision and I truly feel that it was one of the reasons to how fast Dottie improved and the weight she gained. It was such a positive experience.
|
Our daughter, Mae, was born at 32 weeks, which came as a great shock. We were invited to join the FEED1 trial, and due to the nature of it we only had a short time to make our decision on whether to participate. The term 'clinical trial' can be daunting, but it's better described as 'research'. Researching how babies born prematurely can be given the best start in life. We had plenty of information provided, and the trial team have kept in touch to keep us updated.
The staff at Tunbridge Wells Hospital's NICU were so supportive and caring, and are very special people. They were also well-informed about the research and the reasons behind it. When Mae was discharged we were delighted to finally be able to bring her home, but we also had a sense of sadness that the weeks we'd spent with them had come to an end. We still think about them now, and the amazing care they gave Mae.
Having a premature baby who needs to stay in hospital is a stressful time, but hopefully the FEED1 trial results are positive and can be used to help the NHS to deliver the best care possible for babies born prematurely. |
|
Our daughter Saiya was born at 32 weeks weighing 3.19 pounds. Her premature birth was unexpected and a stressful time knowing that our baby would have to stay in hospital. Just before my c section delivery, my husband and I were informed about the FEED1 trial. We were at first a bit skeptical about taking part in a 'study' but we were also keen to help FEED1 conduct this research to support premature babies. We were kept very well informed by FEED1 throughout the process and all the staff at NICU had a great deal of knowledge on the study.
I'm looking forward to seeing the results of the trial but my personal view is that the milk that we were feeding our baby through the NG tube helped her to grow. Saiya is now 8 months old and is thriving. We are really grateful for the staff at Leicester Royal Infirmary for taking care of our baby and supporting us.
We wish the FEED1 trial all the best with the research and the results.
|
I love reading the newsletter and seeing how FEED1 is doing,we are so proud to have been a part of it!
My daughter Sophie was born at 30 weeks via emergency c section, it was all a whirlwind & an extremely overwhelming time, I was initially approached about FEED1 in the nicu shortly after she was born and was immediately sure it was something we wanted to be a part of, to help other premature babies! Being a part of FEED1 feels a little like being in a community, and receiving updates and even a card in the post at Sophie’s birthday was amazing.
Sophie is not a year and a half old and she is thriving, you’d never know the start she had in life. She’s hitting all her milestones and then some, we are so proud. |
Our little boy, Roman was born at 30 weeks weighing 2.68 pounds. I had in my eyes the perfect pregnancy until 28 weeks when I was advised birth was imminent. I was cared for by the team at Chelsea & Westminster Hospital where my pregnancy was prolonged until it was no longer safe for Roman, and the care of NICU would be required. Alot of doctors, nurses and various other specialised staff cared for Roman during his 5 week stay in NICU including the research team.
Izabela the neonatal research nurse approached me to participate in the FEED1 study, she was knowledgable, reassuring and clearly had a passion for the study. I was certain early on that I wanted Roman and I to be able to help premature babies in the future so when I had all the information it was an immediate yes. Roman is now a cheeky 2 year old and is thriving, we are so blessed to have been cared for by the team at Chelsea & Westminster through our ups and downs! We are proud to be part of this study and wish FEED1 every success in there ongoing research and results. |
|
We were keen to join the FEED1 trial to help other babies and parents who find themselves in a similar position to which we were in. The team in Luton were quick to explain it all and ensure we knew what we needed to about the study.
Our baby went from strength to strength in NICU and we were fully supported in administering her tube feeds and to establish her breastfeeds. 8 months on she is solely breastfed as we start her weaning journey!
|
| I was 58 years when I had my twins and they were delivered at 30 weeks, weighing just 2lbs each(1kilo) I'm breastfeeding them until now. The support and information I received from the FEED1 study has really helped me as a first-time mother, I turned 60 years on the 12/07/2024 and my boys are still on breastfeeding, and this had contributed to them being very healthy. I would encourage all mothers contacted by FEED1 study to sign up, nothing to lose but to help more premature babies survive. Well done FEED1 study team! |
|
Our boy was born at 32 weeks and is now a very happy and adventurous 21 month old. When he was born we were offered the opportunity to take part in FEED1, in which we accepted.
We found the process very straightforward and feel it had a positive impact on feeding on our son. He took very well to the quantities given, always gained weight and quickly and has a very good appetite now. So thank you!
|
| Our experience with the FEED1 trial was great. Our son Max, was unexpectedly born at 32 weeks over 3 years ago now. We were informed of the trial pretty quickly and agreed straight away. Max was part of the trail that had breast milk through his ng tube and we believe it helped him grow much quicker, become stronger and healthier overall. We were in hospital for 5 weeks and he left a fantastic weight and very much a foodie. This has not changed! He is an absolutely thriving and energetic 3 year old (who is the same height and weight as his peers), who adores his food and we are sure this is down to the trial. All the support we received was fantastic and we can't wait to see the results soon. |
Alfie was my first baby, as a normal pregnancy I was ill sickness ect and was very uncomfortable . My plug had come out at 27weeks and on hospital check I was 1cm. 2 weeks later at 29wks my waters broke and I managed to keep my baby in until 31weeks and 1 day, were I was advised it's better for both that they get baby out. I had my beautiful little boy via emergency C-section and was in NICU for 27 days weighing at 3lb 15oz. 9weeks early.
I was asked to join the FEED1 to help with the research and we were more then happy to help. Everyone involved with Alfie was amazing and he has been an amazing string little boy ever since he is now 6 months and enjoying solids getting all messy. |
Thank you so much for your incredible work. It’s been an honor to be part of this study. Kim, Ruth and Ella were born via c-section on 6/6/23 in QEUH, in Glasgow, Scotland. Since very early in the pregnancy it was clear that they would be premature and that they’d need to spend some time in NICU. The only question was how much. Thankfully enough, we made it to 31w6d (nearly 32w, which was the initial golden dream!). At birth they were little, but mighty! They weighed 1.1, 1.3 and 1.5 kilos. Very soon, one day or so, they were all breathing by themselves and happy to be in this world. We spent 5 weeks in NICU (a big shout to all the incredible team in the hospital that made their stay a great time for all the family) and since then they’ve been with us at home. Gaining weight at the beginning was a bit difficult, reflux and intolerance to cow’s milk didn’t help, however, once we started them with solids, at around 6 months of age, they are really catching up!
Our twin boys who were born at 32 weeks are now 1 years old and thriving, I think the trial had a huge impact on how well they did whilst they were in NICU!
Please see below some shorter sentences of what other FEED1 Parents had to say:
- I am so glad I’m taking part in FEED1 for premature babies!
- We had brilliant results from the FEED1 study. I had a prem baby and it worked for my baby, I was so happy and the support of Laura from Liverpool Women's was fantastic!
- The FEED1 trial became a big part of our Neonatal journey and I'm sure it has ensured the best outcome for our little one who is now thriving!
- Our little boy is sweet, humungous, full of life and noise and curiosity. We love him very dearly and look back often on our time in NICU and everything everyone did there to help him and us to get through it. It's great to see new research being done to ensure premature babies get the best possible support. Thanks for all your hard work!
- I was given a leaflet and loads of information, which we were both very happy with and how it was done. I feel this programme has helped our daughter so very much!
- I will forever be thankful for this study. I really do think it helped with my little boy in those early weeks!
- Overall a really happy experience!
- We joined this trial because it helps all these little babies. Participation has been something that doesnt take any time but can change lives!
- I’ll still be forever grateful for this study for my little boy. He’s 3 now and absolutely thriving and you’d never think he was a prem.