Baby Bryn’s Story

December 17th, 2011 by Heather

My little girls were born october 1 2011. I was 31.5 weeks at the time. I was ecstatic that my body made it past 30 weeks. I never in a million years thought anything would happen. Londyn was born 2 11 and bryn was 2 7 . The drs were raving how they were above average preemies but it was always followed with is all we worry about is infection.
It was the happiest I had ever been in my life. 5 days after they were born at about 5 am i got a call . Bryn had contracted NEC. The drs said we caught it early shes on antibiotics and doing great. Death was never a thought. About two hours later the drs called and said Bryns doing fine but we want to transfer her for evaluation. He again reassured me its just precautionary and she was doing fine. I rushed to the hospital , my little angel stomach had turned green. I still felt confident that she would make it. I was so ignorant!! It had been a raining day and i was more nervous thay the ambulance would get into an accident. I cried and cried and told them to please call me as soon as she arrives. Two hours later I got the call. Bryns intestines perforated and she had died. That phone call replays in my head everyday. I had to bury my little angel. Londyn left the nicu 6 weeks later. Londyn is my miracle baby. She has a little angel watching over her. NEC is a horrible disease!! More research needs to be done on this. How in 2011 do they not know a cause!

19 responses to “Baby Bryn’s Story”

  1. hayley grant says:

    I am so sorry for your loss. i agree with you, you would think in this day an age they would know a cause and be able to treat it better i lost my little boy to nec on the 9th of october 2011 he was 10wks old and every day his last few days go round and round in my head ๐Ÿ™ xx

  2. heather lemer says:

    They were days apart! There is not a day that goes by that I dont say WHY!!! I cry every day. No one will every know what it is to lose a child unless they been through it. I am doing the march of dimes walk in honor of my little girl. Even if it helps a little . I am so sorry for you and your family. There are no words to say but your little boy is a beautiful angel watching over you.

  3. Jodie says:

    I had my little boy 5 weeks ago very early at 28 weeks. He was at Exeter hospital and only recently transferred to Bristol for treatment on his head. Just as we were getting hopeful regards his return to Exeter we were told today he had NEC, being assured they have caught it wary we r told to remain hopeful! Easier said than done, especially when I am sure our sons NEC has been partly caused by the hospital not continuing with the routine feeds he managed and got used to at Exeter of 7ml every hour and doing it their way of 12ml every 2 hours, the 12ml is too much at one go and I believe has there for caused this. Can anyone else say a change in feed pattern etc has played a part in their little angels having NEC? x

  4. Jodie says:

    I had my little boy 5 weeks ago very early at 28 weeks. He was at Exeter hospital and only recently transferred to Bristol for treatment on his head. Just as we were getting hopeful regards his return to Exeter we were told today he had NEC, being assured they have caught it wary we r told to remain hopeful! Easier said than done, especially when I am sure our sons NEC has been partly caused by the hospital not continuing with the routine feeds he managed and got used to at Exeter of 7ml every hour and doing it their way of 12ml every 2 hours, the 12ml is too much at one go and I believe has there for caused this. Can anyone else say a change in feed pattern etc has played a part in their little angels having NEC? xX

  5. Heather says:

    I totally agree with you. They quickly were upping her feedings. I replay every second of her last hours. Did they miss the signs? I remember her having severe apnea the night before. The nicu chalked it up to a normal preemie thing.

    After my baby died the nicu was on high alert and they slowed feedings for all babies. It is a shame that my baby was the example!!
    My prayers are with you Jodi!!

    Also does anyone know if there is a specific organization that does research on NEC? I am selling bracelets in Bryns honor. All proceeds go to my march of dimes team. I would love to donate to a specific organization that deals with NEC

  6. hayley grant says:

    my little guy had, had an op on his airway as they had damaged it thro ventilation an had 2 stay sedated for a week they had him up to full feeds in a couple off days i think they increased his feeds to quick to soon an i keep wondering why they left him from the wednesday night to the saturday afternoon before they decided to take a look and see what was happening by then it was 2 late :'( x

  7. Heather says:

    Do you think NEC is spread from baby to baby?

  8. hayley grant says:

    i think it does when kian was put to another hospital for his op, after we were told kian had NEC the doctor told us he was treatin another 4 babies for it kian was 10wks old an age we thought he would not have gotten it ๐Ÿ™ x

  9. heather says:

    When Bryn first got diagnosed the Dr showed me another baby that had it and recovered from it without surgery just antibiotics. That is why I never thought death was a question. I completely think it is transferred from babies. I did notice she got it a couple days after they took her blood.
    Was your baby in a level 2 or 3 nicu? When Bryn died I blamed myself, how could I have not had my babies at a level 3 nicu. My dad is a prominent obgyn and he never even said anything to me about it. But the more I think about it level 3 nicu’s have sicker babies and I really do believe part of it is contagious. But regardless she got it .

  10. hayley grant says:

    my baby was in scbu in intensive care but was just about to be moved to special care an have all his tubes removed he’d even had his first bottle he was doin so well but then they damaged his windpipe an put him to a nicu in a bigger hospital i’m not sure what level they never said but i had never even heard of NEC until they phoned us to say he had it but they had caught it in time how wrong they were x

  11. Heather says:

    My brain is so fried I just had to look at her death certificate. She actually died oct 8 one day before your little one. Feels like a nightmare that I never woke up from

  12. hayley grant says:

    Same here it goes round and round in my head all day long all the what ifs and when i wake it the morning not that i sleep mch but just for that second i feel its all been a dream then it hits me like a sledge hammer that its real and my heart is broken all over again. I keep thinking because i lived a 2 hour drive from the hospital that he was in that i’v left him there an forgotten to go back ๐Ÿ™ x

  13. Adrenna says:

    I lost my little guy 7 months ago & after reading your comments I felt the need to post. My husband & I believe our son got fed too much too soon & this was the cause for him developing NEC. He had tummy issues after he was born, but they were thinking it was a meconium plug. After a few stool softners he was good to go. His feeding increased over a week to max, max feeding. He was not showing signs that he could not handle his feedings & everyday they were increased. The day before all hades broke loose his feedings had been doubled. It was set to go up first at either the 3 or 6 feeding and when they weighed him on the next shift he had gained more weight and they increased his feeding again at the start of the 9 o’clock feeding. The only thing we noticed different is that the night befire our world was turned upside-down, he was extremely fussy when we came in that night. It was assumed he had gas and burped him. My husband held him & he was fine. We just believe he got fed too much too soon for his little intestines to handle everything thus bringing forth NEC.

  14. Heather says:

    Yes , i am so confused of why they feel the need to up they feedings so fast? Is it because they want to try to get them out as soon as possible? As i said in a recent post once my baby died they slowed feadings for every baby in the nicu. Is there a reason they cant do that for everyone?? It would have saved our babies lives!!

  15. Lisha says:

    I also agree that more research should be done. It seemed that the most experienced doctors could not reassure me that everythimg would be fine. They still do not know the exact cause and cure of this disease. As mothers we always ask ourselves why my baby. I have stopped asking that question because I believe that God has revealed to me and will continue to reveal the reason. My faith in God is ALL that helps me to have strength. I am thankful for your one baby that survived, while I also am sorry for the loss of your other. I too am a twin and couldnt imagine life without my best friend. I bet your baby will always remember her sister. I am so sorry, I will pray your strength in the LOrd.

  16. Kimberly Turner says:

    I WOULD LOVE TO TALK TO THESE WOMAN ABOUT THERE ORDEAL. PLEAS

  17. adrenna says:

    Kimberly, what would you like to talk about? I’m definitely here to talk about it!

  18. Marina Hanekom says:

    Hi รขโ‚ฌโ€œ I DEFINATELY believe and know in my heart that the increased feeds caused the death of my daughter. I have severe post traumatic stress and almost a year later (she died on the 26 March 2011) i am still a mess and the grief has flattened me. My daughter, Chloe, was born at term (part of a twin) and was so healthy and strong, but low birthweight. She was doing so well on small feeds and then her pediatrician decided to increase her feed by 11ml within a matter of 6 hours!!! Not even 4 hours after he increased her feed she had a distended stomach and was critically ill. 24 hours later she passed away from a total blackout of NEC (her entire stomach and bowel was dead). I strongly believe it was the increased feeds that caused this. I am very bitter and angry at the pediatrician and have reported him to the South African Medical Council. I live in South Africa and gave birth at the best private clinic abd NICU unit in the country – this clearly did not help us one bit – we were at the mercy of a negligent pediatrician. I think they try and ‘fatten’ our babies up quickly so that they can be discharged early, in order for the medical insurance to pay out the minimum funds. Regards Marina Hanekom

  19. yvonne says:

    My daughter was born early at 32 weeks but was otherwise pretty healthy- no need for oxygen and was doing well- i noticed that when her feedings were increased she threw up and it was greenish/yellow- i was nervous but was told it was normal that preemies sometimes have a hard time keeping their food down- i was more concerned about the color- but what I did know i was a new mom and only 20 yrs old- later in the evening she was very sleepy and did not grasp my finger with her hand like she normally did- i was told again that she was tired and it wasnt unusual for a preemie to sleep a lot after 2 or 3 days after birth- she had a feeding tube put in – the next day i went to see her and her stomach was distended and she wasnt active- I called the doctor over and he asked the nurse when she had a bowel movement last- she was taken for tests and I was told she had NEC- she was tranferred to a childrens hospital and on day 5 her intestine perforated and she had emergency surgery and lost about 70% of her intestine- I have always wondered if she didnt have the feeding tube forcing food into her if she would have ever gotten sick–She is now 22 yrs old and healthy but I have always thought if she was never forced fed if she may have never had to have surgery.

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