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!
17 Responses to “Baby Bryn’s Story”
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About NEC
What is NEC?
Necrotizing Enterocolitis (NEC) is a gastrointestial disease which typically affects...
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
xx
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.
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
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
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
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
Do you think NEC is spread from baby to baby?
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
x
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 .
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
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
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
x
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.
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!!
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.
I WOULD LOVE TO TALK TO THESE WOMAN ABOUT THERE ORDEAL. PLEAS
Kimberly, what would you like to talk about? I’m definitely here to talk about it!