Laura’s Survivor Story

August 7th, 2011 by Laura Eyre

My name is Laura I am a survivor of NEC, I am 23 years old and will be qualifying as a nurse in two months time.

I am a quadruplet and was born two months prem, my brother and sisters were small but healthy. I was lucky enough to survive NEC but I spent my teen years being very self conscious about my scars.

I had two scar revisions at the age of 14 and 15 and now that I am older I’m very proud of my scars and feel very privileged to be a survivor.

Thank you for giving me the opportunity to share my story with you all.

20 responses to “Laura’s Survivor Story”

  1. Miranda says:

    Laura,

    I agree, you should wear those scars proudly. Don’t be self conscious. You survived a devastating disease. I know if Madelynn would have survived I would have urged her to wear her’s proudly as well.

    Good luck in nursing school.

    ~Miranda

  2. Lauren says:

    Laura,
    I just wanted to let you know that you’re now my idol 🙂 I was born with a twin and she was perfectly fine, but the doctors discovered I had NEC. The doctors removed 4 cms of my small intestines and removed my appendix as well. I had a stoma bag for several week and a blood transfusion. A huge IV left two scars, one on my neck, the other on my chest, and the close-up surgery left a good four inch scar straight across my stomach that is still clearly visible today. I’m 16 years old and I’ve been self-conscious of these scars my whole life. My mom tells me i shouldn’t feel that way, and that if i REALLY wanted to i could get plastic surgery to remove them once i move out… but i dont want to do that. Removing these scars would take away a part of me that makes me who i am today… heck, they make me here today 🙂 thanks so much i really needed this confidence boost. I know im not alone 🙂

  3. Laura says:

    Hi Lauren

    I also had a stoma and needed a blood transfusion, I felt that i was lucky to have had my stoma reversed, I also had a hernia repair which is common in people who have had major bowel operations.

    I am glad my story has helped you, my aim of posting on here was to help people who were going through experiences I have already had. My biggest worry at your age was that boys would perceive my scars as ugly, luckily I have found that they were more interested in what happened and my story and I am pleased to say I am now happily engaged.

    Don’t hesitate to e-mail if you have any questions.

    Take care

    Laura

  4. Lauren says:

    Thank you so much, Laura. This is exactly what I needed.

    I AM currently having the same worries that you once did, especially when it comes to boys and dating. Many people have already told me that boys would probably be more intrigued by my scars, but these words usually come from friends and family, people who don’t actually know what it’s like.

    Your words were definitely the proof and the confidence boost I needed. And congratulations on your engagement! I’m extremely happy for you!

    My biggest question would probably be: When you were my age and even during the years afterwards, were you able to comfortably wear bikinis when going to the pool or the beach? I’m attempting at helping my confidence by wearing them, but sometimes I feel more insecure than other days. When that happens I end up wearing a tankini instead, but I don’t want to feel ashamed.

    Thank you so much again!

    ~Lauren

  5. Laura says:

    Hi Lauren

    I do wear bikinis, up until i was sixteen i would visit my Nanna in Spain and she had a private pool so I was around my friends and family. When I went out with my sisters and they had bikini tops on I would tend to put on a top or walk with my arms crossed.

    When i was 17 i started going abroad with my friends and to start with was I was self conscious but i released that my friends weren’t bothered. Although I did see people looking I choose to ignore it and soon I didn’t notice.

    I went to the Dominican Republic with friends when I was 17, it took till the last day of the two weeks for one of the people I meet there to build the courage to ask me about my scar and then what he actually said was ‘is that real??’, I think he was really nervous but I was glad he finally asked as he’d been looking at it for two weeks and was quite obviously intrigued.

    This year me and my friends are hoping to go Egypt in November and i have just purchased a new bikini!

    Me and my Mum measured my scars yesterday as I didn’t know exactly how big they where, my main scar is above my belly button and is 12 inchs long and my scar from illiostomy is about 2-3 inchs long. I was going to post a picture for you to see but I am unsure if we can do that on here. My scars are a lot better since the scar revisions as there not as keyliod.

    But sadly like any girl I do have my self conscious days but luckily I always have my friends to bring me back down to earth and tell me to ‘man-up’ and ultimately I’ve learnt that looks are most definitively skin deep.

    So i say go for it and wear that bikini!

    Laura x

  6. Lauren says:

    Laura, thank you so much again!

    Honestly, you’ve really helped me. Again, this is EXACTLY what I needed. I’ve never had any scar revisions, but I know the scars themselves are not that bad. My main scar is above my belly button as well. Sometimes it bothers me because rarely I’ll have an itch right below it, but when I do, I can’t exactly scratch the area because the area right below the scar is numb. It’s always been that way.

    My whole life I’ve known that these scars were from a problem I had as an infant, but I never really knew just how dangerous this disease is until recently. In fact, I didn’t even know it was considered a disease. I was looking into it when I found this website a few days ago and I’ve realizes just how lucky we are to have walked away with only scars. Some children have issues for the rest of their lives and I am forever grateful for the way things turned out.

    I am also forever grateful to you and how greatly you’ve helped me! I’ll never forget your words. They’ve really changed my perspective and I WILL wear these scars proudly for the rest of my life.

    The biggest problem for me was always the fact that I knew the statistics. I learned NEC is more common than I used to think, so I’ve always wondered why I’ve never met someone else who shared the same backstory as me. Someone I could shared the scars with. Someone who could help me.

    Stumbling upon this website is truly an amazing blessing I’ve been subconsciously praying for for a long time. Thank you so much, Laura. 🙂

    ~Lauren <3

  7. Laura says:

    I have also wondered the same and I only looked into it more recently as well. I came across someone at work who’d had NEC. It was really intresting to talk to his dad and here about thier experience.

    I knew the statistics and when I worked on a Gastroentrology ward a few years ago, all the Drs were shocked that i’d had NEC and told me how lucky I was.

    I’m glad I could help you and trust me you have helped me to, knowing that you feel the way i did at that age, as I did sometimes feel I was being ungrateful that I hated my scars so much. But talking to you has emphasised the fact that it’s a perfectly normal way to feel so i thank you for that.

    I hope everything goes well for you in the furture and I’m sure you will turn into a confident young woman!

    I’ll always be here if you need anything.

    Take care Lauren

    Laura x

  8. Elaine says:

    Laura and Lauren,
    This year we got more survivor stories than ever…hence I wanted to create a new focus around it. Between the section on Babies Surviving NEC and adding the word Survivor into the stories and generated a new network.
    Lauren and Laura you are showing me this is helping you as much as I had dreamed.
    Thank-you!
    Elaine

  9. Clare says:

    Hi my name is Clare. I am 30 years old, a twin and have had 3/4 of my small intestine removed, as well as my appendix. I was two months premature I have only just become less self conscious about my scars. I have a beautiful husband who has always made me feel good about myself. I have a scar that stretches across mOst of my stomach and a smaller scar from my appendix.

  10. tanupa says:

    hi laura i just want to thank you for sharing your beautiful story with us 🙂 you just made my day today. i just had my baby 2 month ago and she was diagnose with nec.SORRY MY ENGLISH IS NOT TO GOOD :(She had her stoma reversed when she was 2 weeks old. we were very devastated by this situation.we had never heard about something like that before.i feel very down when i think of this all the time.i keep thinking that i went wrong somewhere in my pregnancy but yea now im happy when i saw there are survivors of this devastating disease.my baby is feeding well but yea im always worried even tho doctors said everything is fine and gonna be fine.

  11. Linet Ayilo says:

    Hi My name is LInet Ayilo.I got a baby boy last year and on day three he was diagnosed of NEC.It was a very traumatizing period for me.My son fell very ill and after the first surgery he developed sepsis which led to multisystem disfunction.Thank God he recovered from that but developed a fistula which discharged through the belly button.The fistula later on closed on its own but he had to undergo a second surgery where the remaining part of his colon was removed.He passes very loose stool and he is tiny am worried if this would go back to normal after a while oh and his growth too.He is now fine but I still worry every now and then.Thanks for having put your storie here they are a big encouragement

  12. Leighann says:

    Hello Linet and all. I am the mother of twin sons who will be 34yrs old this year! They were born about 4 weeks early by c-section. Jeff was ok, but Gary had polycythemia and was hypoglycemic so he was transferred to Egleston Childrens Hospital in Atlanta Ga. At 4 days old they discovered his intestines were dying. They opened him up and his large intestine fell apart in the surgeons hands. They removed it and 20cm of the small intestine too. Gary had an iliostomy bag for 3.5 yrs. He spent 9 whole months in the hospital on iv’s. They ran peripheral IV’s for 7 months before doing a cut down into his main facial vein. That lasted for 2 months. His remaining intestine was slow to work. He weighed 4lbs.3oz at birth. At age 9mos when he finally could come home he weighed only 11 lbs. Back in 1979 era, was the first time they aggressively started to save NEC babies. The surgeon said that they used to just close them up and let them die. Gary’s stoma was dark and the doctor who was Catholic told my father that his kidney’s were failing and that he needed to be ready to make funeral arrangements. We prayed, everyone prayed. The next morning his kidneys kicked in and the swelling went down. His stoma turned from gray to pink with blood. The doctor said it was a miracle. Unfortunately his doctor said later that they saved too many babies who ended up with nearly no intestines. They had one little boy who was 2.5yrs old and was abandoned at the hospital by his teenage mother. He spent his entire life in the hospital. They were running out of cutdown sites to feed him. They said when they couldn’t get a line in they would not be able to help him anymore. I don’t know why he didn’t just have a feeding tube to the stomach, but the nurses said he would die. So sad… Gary, my son, was discharged at 9 months old home where he thrived. He was somewhat slow in school and ended up in special ed because of it. He was the most advanced in his class though and loved school. He lives independently, drives, pays his own bills, goes to church (quotes scripture better than most preachers) and works at grocery stores. When Gary was small and had his bag, he had very loose stools too and they smelled very bad. Of course I was used to it. They didn’t reattach the ilium to the lower colon until he was old enough to have sphincter control at 3.5yrs old. He had been urinary trained since 2. When he had his surgery (at Duke Univ in NC) he hated being put in a diaper and did not like the poop coming out into his diaper, so he wanted to go to the toilet to have his movements. Life went on for many years and no problems. At age 18 he had a partial blockage. The surgeons opened his abdomen up and found he had adhesions (scar tissue) all over his gut. So they pulled it all out, removed the adhesions and repacked him back in. He has a large upside down “cross” scar from his chest down to below his hip line. He has never been self conscious about his scars or tummy. As a child he ran around the beach with his bag sticking out of the top of his shorts. If someone asked me what it was, I would answer them politely. People are naturally curious. It is not necessary to be rude to people and it is a time to educate them about it. Gary will be 34 this summer along with his twin Jeff. Jeff ended up getting juvenile diabetes at age 12. Gary says he cannot eat any nuts. Certain foods bother him. His stool is almost always what we would call loose, but to him it is normal. He also has to watch drinking caffeine sodas in summer as he can dehydrate easily. He is smaller than Jeff height wise. Jeff is about 5ft10 and Gary is 5’8″ tall. They were deemed not only identical twins, they are mirror image and they were born discordant twins, which is why Jeff was 5lb 10.5oz and Gary was 4lb 3oz. I was blessed that he survived at all really..If you want to see Gary, he is on Facebook under Gary Sunday. He was in the first group of children saved from NEC in 1979 and he is a testament of hope for all of you moms and dads with kids going through this. Hang tough, I was 21 when I had to deal with it all. I was divorced a month before my babies were born too, so 1979 was a rough year. Prayer and faith will see you through. If any of you want to email me about Gary or if I can help in any way, my email is thankfuleveryday@bellsouth.net. God bless you all!

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  14. terrell says:

    I just turned 12 October 7th 2014,and I spent my birthday in pain.In the ER.I don’t know wats wrong with me,I know I had NEC,being 2 months early,I had the surgery at birth 20002,so im dealing wit the scars.and now me and my mom are back n forth to the hospitals,to see y im hurting.PLEASE HELP.THANK U.

  15. Laura says:

    I just wanted to up date my story. Since qualifying as a nurse I have worked on a surgical ward and an A&E department then last year I got my dream job of working on the neonatal unit! I am so proud and feel privileged to be doing the job and helping families the way the neonatal nurses helped my family 27years ago. I amproud to say I am a very lucky 28 weeker that survived NEC and now I care for neonates and babies with NEC. Also now after trying for two years I am 35 weeks pregnant! I hope my stories continue to bring hope to all of you on this site.

    Thank you

    Laura

  16. Kasia says:

    Hi Melissa Mae. Very nice that you have the habit of reiadng. It seems that you are very fast at reiadng and that is cool! Ok, answering to your question:I like to read everything that has to do with Finance Accounting because my job requieres me to do so or motivational books as well.The most recent one I read is one that my mom, who is a Tanatologist and currently attends human conduct courses, gave to my sister and I, called Amale sin dejar de quererte (Love him without quiting loving yourself) by Beberly Engel. My mom told me that it was not anything personal but that it’s always good to read something like that if you are about or already in a relationship.Another one that is great and Brian I read and were suggested to read and comment by our Pastor who gave us our premarital counseling is Saving your marriage before it starts by Christian authors Les Leslie Parrott. It was so interesting and I liked it so much.And another one that we got too and have not gotten done reiadng yet, but is very interesting so far is After you say I do , by H. Norman Wright.Ok girl, for now I say bye and hope you are enjoying the rest of the weekend.God bless,Gabriela.

  17. Leighann says:

    Laura, I just read your update. I am so happy for you for your new job working in neonatal dept. It sounds like a dream job. You can be such an encouragement to the families and a beacon of hope because you are a survivor. Also congrats on your pregnancy. It is Oct. now so I am sure you have delivered by now. Blessings on you and your family! So proud of you!

  18. Amber says:

    Laura, did you ever have bowel issues from NEC surgery as you got older? I’m 28 now, and a survivor of NEC surgery as a preemie with huge abdominal scars to boot. I’m finding now that in the last 3 years, I started having issues with constipation. Then I was getting lower abdominal discomfort right below my navel – and now the skin in that area hurts. No doctors can figure out what’s wrong with me – beyond the obvious scarring, adhesions, IBS and my major anxiety over all this. I feel very alone. I’ve gotten used to my scars, had even accepted them – but now it’s like they’re turning on me. I’m sad because I guess if they were to try to remove the adhesions, it might cause more problems. I’m unsure what to do now and wondered if anyone else went through similar?

    PS – girls, if you’re self-conscious of your scars around guys, DON’T BE. The right guy won’t care, might even love you more for the scars. Promise.

  19. Miriam says:

    Hello everyone,
    My two surviving 24 weeker triplets are now age 16, one boy and one girl. My daughter had NEC, thank G-d has been without intestinal issues so far but I am worried something may start when she’s older. She is begging for plastic surgery to remove her scars which are really noticeable and bother her tremendously. I wish she would accept them but she hates them so much.

    The issue is she is overweight a bit (the opposite from those of you who have had issues with loose stools therefore making you underweight.) Her scars make her stomach area bulge a great deal above and below her big scar. It is noticeable through clothes as well, never mind a bathing suit. We are looking into seeing if a tummy tuck kind of procedure has ever been done on someone with NEC and what kind of adhesions or state of her intestines are under that scar. I am afraid to let a plastic surgeon operate on her and am trying to see what a Gastro would know about post-NEC adults. It is so hard to find information on survivors who never had bowel issues who did plastic surgery, especially more than just scar revision. She wants the whole area gone and has enough excess skin and fat to do a tummy tuck. She’ll need liposuction too in order to get rid of all the bumps.

    I would rather her wait a few more years but she doesn’t want to be a teenager with this anymore. I understand her but as a mother who almost lost her once, I don’t want her to go through a major surgery. Would love some input from you all, thanks!

  20. Erin Udy says:

    Laura,
    My name is Erin. I am 30 years old.I am a NEC survivor too. My small intestine was completely removed. I was wondering how your pregnancy went since you are a NEC survivor? Did you have a normal delivery or c section? Was it considered a high risk pregnancy?

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