Hi, any suggestions for some good books on preterm babies? Being a father to a preterm baby
I'm interested on preparing myself for what may lay ahead. Not complex medical books of course

Thanks in advance

Hi, I was born at 26 weeks and spent a long time in the NICU. I have some abdominal scars to fix hernia I had and some small puncture scars on my hands and feet, I also have a small "patch" of purple veins on my right temple (maybe related to an IV being inserted there?)
I also had an hemangioma that faded over time. However, you can still clearly see where it was and people often ask me if it is a burn (it kind of looks like a part of my flesh is missing).

Anyways, that's enough about me. What scars do you have from your time at the NICU?
I was inspired to post this after reading this article: https://www.prematurity.org/scars.html

I'm just curious to know the experiences of other people who were born prematurely.

Hi there! I was born at week 33, now at 25 I have blood circulation problems and I want to know if this can be caused because I was premature. I have the kind of circulation problems that people have above 60. These problems started when I was in my teens: pains in my legs after wearing jeans a couple hours, swollen legs in summer, bruises without reason.. then at 19 I developed spider veins until now, Im developing a varicose vein in one leg. Do you think is this related to my premature birth? Does someone have a similar experience? **English is my third language so sorry If it's not correctly written

Hi Everyone, just wanted to ask if those parents and ex-preemies in the U.K. could help me out with some research I’ve been involved with. It’s about your thoughts on linking the neonatal records to the educational records that currently exist, to help better understand long term outcomes. More info on the research can be found here: (along with my blog about why I love research) www.NeoWonder.org.U.K. -we should hopefully have a directly link to the survey up soon, but here it is just in case.

Really appreciate the help, and any questions just ask!

https://imperial.eu.qualtrics.com/jfe/form/SV_01eFCizcR0gHJdP

Hi guys,
I'm was born 26 weeks preterm, and as you know, at that age your skin hasn't fully developed yet and is transparent. I'm now 18 and you can still see my veins (including the small ones) on some parts of my body: hands, arms, and chest. They are quite visible and I was wondering if this was linked to being preterm and if anyone else is like this.

Thanks,

Hi there! I am a researcher at the University of Iowa. I work in the Developmental Experience and Neurocognition (DEN) Lab. We would like for you and your child to consider participating in a study that helps understand premature birth.

Each year in the United States, 1 in 10 babies are born prematurely. Long-term academic outcomes for children born preterm vary. We conduct research to better understand how children born preterm develop and learn. If your child was born preterm and is now between the ages of 3 to 5 years-old, you can participate in our Zoom study from the comfort of your own home! In this study, your child will go on an adventure with the DEN Pack's close friend Flynn the fox! Flynn the fox will need help finding his friends on Winterberry Road, the more activities your child completes the more friends Flynn the fox will find! Some of these activities you and your child can do together. You will receive monetary compensation and a feedback letter on your child's performance.

To see if you are eligible for this study please complete our screening at this link:

https://redcap.icts.uiowa.edu/redcap/surveys/?s=9LTRMALWN9

If you have any questions about the study you can contact the DEN Lab via email or phone.

Email: PSYC-DEN-Lab@uiowa.edu

Phone: 319-467-0591

Website: https://demir-lira.lab.uiowa.edu/

Have any older adults born extremely preterm experienced any cardiovascular issues like hypertension or heart disease? I was born at 26 weeks, now 20 years old and I’m worried about it? I read articles stating that I may be at risk for heart disease and hypertension due to structural differences in the heart. Thank You!

We are occupational therapy students at SUNY Downstate Health Sciences University in Brooklyn, New York.  Our Master’s project is a research study titled, “Babies’ transition from the NICU to home: Clarifying the occupational therapists’ role in the process.”  We seek to interview parents and legal guardians of babies who were in the Neonatal Intensive Care Unit (NICU) to obtain feedback on a draft of our occupation-based, NICU Transition Contract.

We hope any feedback from participants will help us to strengthen the NICU Transition Contract’s effectiveness and its ability to support families in the future. Thank you in advance for your assistance. 

If you’re interested in participating, please contact the Principal Investigator, Dr. Brigitte Desport, contact information listed below in the flyer!

​

https://preview.redd.it/0rzopfnb1f261.png?width=860&format=png&auto=webp&s=765878b43d8509f78ccd6a13df4b156e654816c2

Wishing everyone here a very happy World Prematurity Day, can we start a discussion about the things we are most proud of, no matter how big or small !

Hi I'm a 24 weeker born in 1997. I had pneumothorax 3 times and was on a incubation for 130 days ( I think) So my voice is usually described as husky or raspy and is sadly a soft spot for me even as an adult, I have always struggled with general anxiety as well as separation anxiety from my parents, mild depression, low self-esteem and feeling like I didn't belong. I am curious what y'all do for work? Did you struggle with getting employed?

EDIT: I got a job! in what I thought was my dream industry! Did you all let your employer know you were "disabled" straight off the bat or just let them work it out? THANK YOU all for the kindness, love, support and advice ♡

I would like to ask you have you dealt with problems of low self esteem, anxiety, panic attacks, depression, feeling aloof from peers, and general feelings of inadequacy? I am 27 years old now. I was born 27 weeks premature, and I feel like throughout my life I was living with serious problems with myself. I feel like i have a mental disibility and feel that I cant think logically at times. I remember reading in a website about a few other people who are premature and they felt abnormal. I would like to hear from other premies please because sometimes i feel that I'm no good for the world. I have caused pain and disappointment. I've had times where I didn't desire to live, even now, I feel ashamed of myself, full of guilt of who I am and I wished i was never born. Link in reference to others born premature in the comments section of this website why the hell do I have hell in my life my mom it's always telling me not to copy my sister because she has a normal life she's telling me that stop being jealous and stopped helping people that's how Society Works people copy each other but when I do it my mom goes ape shitt on me nice and still have a normal life and she's always hanging out with her friends nobody will ever hang out with me i remember I made a friend on my youth group class we need to change Facebook and telephone cell phone number i message him everyday he told me he's making excuse telling me I'm busy working that why a lie he did not want to hang out with me he called me day one he was yelling me saying stop message me and he block me he message my sister saying tell your brother stop being gay how the fuck iam being gay my sister talked to her friend everyday at 9 a.m. until 6 p.m. is she being lesbian I hate to help people love to judge people in society when it seems like your looks matter for friendship as well maybe that's why he didn't want to talk to me because he think that I was ugly I wish I was not being depressed all my life I was in hell no one like men

Hello everyone! I'm quite glad to have found this community. I was born in 2000, at 29 weeks, and was fortunate enough to be born in one of the best of the first world countries at the time: Germany.

I was extremely small at birth, and was put into some sort of incubator for weeks. I was expected to be crippled for my whole life. But nothing. Absolutely nothing.

I have gotten health check-up after check-up over the past year due to a bad flaring up of hypochondria, which doesn't afflict me so much anymore. Nothing. Absolutely nothing.

But I've always been a little bit uneasy about the whole situation. There can't be nothing wrong with me from this, right? I worry I'm going to die young sometimes because of being born early, but there's no evidence of that in my case.

Does anyone else feel similar? It's disconcerting.

I was born at 24 weeks & I had a grade 3 bilateral interventricular bleeds, grade 3-4 are classed as severe & chance of disability is high. I have aspergers, adhd & dyscalculia, but they all run in my family anyway. I’m unsure of any other potential consequences, but I never seem to hear of any other preterm adults that had this.

Researchers from the Preemie PAPAs Project at the University of Queensland (Australia) are shining the light on the unique journeys faced by preemie Dads by investigating the well-being and parenting experiences of fathers of preemie children between 0-18 years of age. If you are a preemie father, please share your experiences with them here: https://exp.psy.uq.edu.au/preemiepapas/

Researchers have official ethics approval (#2020000736). Email jemima.walker@uqconnect.edu.au if you have any questions or would like more information.

Thank you!

Researchers from the Preemie PAPAs Project at the University of Queensland (Australia) are shining the light on the unique journeys faced by preemie Dads by investigating the well-being and parenting experiences of fathers of preemie children between 0-18 years of age. If you are a preemie father, please share your experiences with them here: https://exp.psy.uq.edu.au/preemiepapas/

Researchers have official ethics approval (#2020000736). Email jemima.walker@uqconnect.edu.au if you have any questions or would like more information.

Thank you!

So, I’m terrified. I was born at 24 weeks in 1998. I have no real issues other than mental health.

Being born premature, I’ve recently found a study that was finished in 2020, about how adults born premature have structural differences in our heart and blood vessels. Apparently this means we can’t exercise as efficiently at all, and are less fit, even if we did the same amount of exercise as normal people. This increases our risk of stroke, high blood pressure & heart disease. But even scarier, heart failure, due to our structure alone. My mum also smoked whilst pregnant with me, hence the prematurity in the first place and I grew up with passive smoking, which really doesn’t help.

Of course, I have severe health anxiety and fibromyalgia, so struggle to exercise a lot. I try to walk for at least an hour every day though and recently getting into weight lifting. Getting in five a day is tough, but I don’t smoke, drink, try to avoid junk and have a bmi of 23.3 (from 28.5)

Heart study

Researchers from the Preemie PAPAs Project at the University of Queensland (Australia) are shining the light on the unique journeys faced by preemie Dads by investigating the well-being and parenting experiences of fathers of preemie children between 0-18 years of age. If you are a preemie father, please share your experiences with them here: https://exp.psy.uq.edu.au/preemiepapas/

Researchers have official ethics approval (#2020000736). Email jemima.walker@uqconnect.edu.au if you have any questions or would like more information.

Thank you!

Hello! My step-daughter was born at 28 weeks and one of the surgeries she had shortly after birth was to put her ovaries into place; when she was born her pelvic floor hadn’t fully developed, so her ovaries were starting to descend like testicles. We were told this is very common in premature babies.

She’s now 9 and is questioning her gender. Could this have been a case where she was actually born intersex? Anyone else have a similar experience? Am I totally off base?

Hello parents of preterm babies! I'm predicted to be giving birth to a preterm baby and I'm looking for some advice on a baby monitor for my baby.

What features should my baby monitor have? Should I go for the wearable kinds, like owlet or the more video-based baby monitors? How did the baby monitor help you with a pre-term baby? I would say I'm willing to spend about $100-$150. Is this too much? Is it natural to splurge more for a pre-term baby?

I'm pretty anxious since its my first baby and he's pre-term. If anyone has tips for dealing with the anxiety, please do share too. Thanks in advance!

For those of you who have taken progesterone/Makena shots for subsequent pregnancies, 1) did you feel that it helped and 2) if your children are older, do you feel that it may have caused any health issues to your children? Context: I had a 26 weeker (luckily she is doing great now and is 3) and am 15 weeks pregnant with my second. My doctor has suggested I take Makena shots, but told me that a recent study has shown it to be ineffective and that FDA almost unapproved the shots for this usage. She stated that since it remained the recommended course of treatment, she was going to follow that. I have a friend who had a 31 weeker, took the shots for her second and her son came at 36 weeks. When he was 3, he was diagnosed with leukemia. While I recognize that it's a stretch to correlate the two, there's something instinctual inside me that is telling me not to ignore it. I asked my doctor about it and she admitted that there has been no follow up studies on the children after their moms took Makena and while she didn't think there was a correlation she was unable to say there wasn't either as a result. She stated that it's just as hard to pinpoint why so many people are getting cancer/sick now and days than before as well and hard to always figure out why. My husband feels I'm being irrational and am scared and basically posed the question to me: Will you feel more guilt not taking the shots and having a preterm birth (which we recognize will likely happen, just hoping for later than 26 weeks) and possible complications as a result of that, or will you feel more guilt for taking the shots and IF the baby gets sick in the future blaming myself for taking the shots. I guess I want to hear stories on how your babies have turned out to maybe help me figure out this guilt test?

Check out the survey here: http://survey.app.uq.edu.au/TheJoeyProjectSurvey.aspx

The University of Queensland is currently looking into Kangaroo Mother Care and factors that help or hinder Kangaroo Mother Care use in the NICU globally. They are currently looking for biological mothers whose children are now aged 0-2 years and current NICU nurses to take part. If you'd like to take part, you can participate through an anonymous online survey. It is hoped that information gained through this study will help to be able to create targeted interventions in the future that improve the experience in the NICU and the outcomes of babies.

If you have any questions please email Victoria at victoria.gill1@uq.net.au

The University of Queensland is currently looking into Kangaroo Mother Care and factors that help or hinder Kangaroo Mother Care use in the NICU. If you'd like to take part, you can participate through an anonymous online survey. It is hoped that information gained through this study will help to be able to create targeted interventions in the future that improve the experience in the NICU and the outcomes of babies.

Check out the survey here: http://survey.app.uq.edu.au/TheJoeyProjectSurvey.aspx

If you have any questions please email Victoria at victoria.gill1@uq.net.au

I was born at 22 weeks and 5 days gestation, in August of 1998. As far as I'm aware, this is just one week more than the world record. I've noticed people on here asking about preemies as adults, so I figured I'd share my experiences.

My parents tell me I was always quiet, even in daycare. I wouldn't talk to other kids unless they talked to me. I have several scars from being in NICU, and I remember struggling with math a lot in elementary school. I've always had a high reading comprehension score, though. I've struggled over the years with anxiety, especially agoraphobia (public speaking). I used to dread presentations, and by the end my legs and my hands would shake.

It's gotten better in recent years, though; when I was little I couldn't even order food for myself because I was nervous, and although I do sometimes get nervous about walking up to a counter, I can push through it and do what I need to.

As far as physical problems, I have some vision issues - but it's nothing glasses can't fix. One of my vocal cords doesn't vibrate as much as the other one (I think it's because of the effect of the breathing tube in my throat while I was still growing), causing my voice to have a strange quality to it that I myself can't hear when I speak (unless I hear a recording of it). I have some hearing loss in one ear, but my other ear seems to hear well enough that it doesn't cause too many problems in my life.

That's all I can think of right now. This seems to be a small subreddit, but I look forward to any comments or questions y'all might have.

Thanks for reading, and I'm glad I found this community!

Hi guys, I'm a researcher in Public Health, studying the health consequences of preterm birth in adulthood. Information is very scarce and few people are enrolled in studies (mostly european).

So, we've launched the HAPP-e project in December. The idea is to answer an online questionnaire once a year. The questionnaire is available in english, german, french and portuguese and it's open worldwide. If you're over 18 and you were born preterm, please participate in the project here: https://happ-e.inesctec.pt/

All information is available on the website, and if you have any doubts, please let me know! We are also on facebook (@happeispup19), Instagram (@happeispup), and Twitter (@happeispup)!
Thank you!

I was blind premature and all I can say my life fucking sucks I have been struggling a lot lately so many time because of this disease I was placed in special-education multiple time and I feel rejected nobody wants to hang out with me I have no friends I quit so many jobs everywhere I go people have to complain about me my last job at Walmart I was being harassed and being bullied by these coworkers end it sucks it sucks that nobody understand your pain what you’re going through in life they think we are acting I have a lot of disabilities and it sucks it sucks that you’re still waiting for slow bus at Starks sucks Why did God have to make me like this tell me I haven’t done anything wrong in my life OK everybody is living like a king in the ward my sister is normal she just graduated college and now she has a good job and a paycheck if the World $800 in my paycheck the world $200 my job coach is not doing anything for me because I quit Walmart

4 months early birth weight 390 grams First 6 months life support First 6 years oxegen tanks First 18yrs mostly hospital isolation rooms I'm 32 now I'm really struggling at the moment so many years of pain so many years of isolation and rejection I have no friends no job still live a home all I do is seem to try and all I get back is rejection feel free to kick me out the group but I really wish my mother had turned my life support off this isn't living its a living death I'll pick myself up tomorrow go to the gym cos it's keeping me sane but surely I'm not the only one that feels like this? I can't be the only one that's had a life like this is there anyone who's found support or understanding? I'd appreciate any feedback positive or negative I'm kind of at a loss as to what to try next?