Sometimes the stories come in and my heart smiles a little because a baby is surviving NEC. This site is created for parents like us to share our stories and help one another during dark times. The survival stories give hope, they give light to me even though Caitlyn did not survive. Our goal this summer is to create a forum, until then I thought those with babies surviving could comment here and help a little with hope…
In Feb 2009 I had an emergency C-section at 27 weeks due to preeclampsia.
My little Elijah was born 1 lb 13 oz. I too received a horrfying phone call @ exactly 1 month of age. I had just been with him hours before as I spend every moment I could at his side. I was told to come back to the
hospital as my baby was very ill. Words can not describe how I felt hearing the Dr.’s words I still do not know how I got there as the hospital is about 40 miles from where I live. While I took the drive sometimes 3 times in a day I got there in 20 min. this time. As I walked into the NICU some of the nurses who had taken care of him came right to me and were crying. I thought I was going to faint that was the scariest feeling I have ever had in my whole life. The Dr. began to explain to me that Elijah had NEC as he was going over everything the nurses were at each side of me I think they must have been holding me up. As I write this it seems like a movie I watched not my real life. My poor baby layed there helpless and because of the transfusions his whole tiny body was so swollen. It looked as though someone had blown him up. I was asked what my religious beliefs were and as I am Catholic it was suggested that I have Elijah baptized immediately. I was able to have a priest come that day and my family was allowed to all be in the NICU for the service. His bowel had perforated a couple of days later and he was rushed into surgery. Reading the other posts we were very lucky to have the surgeon right there in the same hospital. He was given an Ileostomy and had two stomas for a couple of months. I became quite proficient at replacing is colostomy bag. He had his second surgery to be put back together. It was a tough road the toughest road I have ever ever taken. And at the end that child went through countless blood transfusions, blew out PIC lines, a fratured femur, numerous infections, 2 surgeries, Osteopenia, Acid Reflux, and a spinal tap. Every day was both a challenge and a blessing he had good days and bad days. He is now 28 months and the light of our lives. I lost my uncle to a sudden heart attack a couple of days after Elijah got sick. I truly believe with all of my heart that his spirit was with Elijah thorugh all of it. He saved him i just felt it. Elijah is for the most part very healthy now. He does have digestive and bowel issues. If anyone has a child who has survived NEC and is a toddler or older now please let me know what issues they have had and any suggestions for diet. It is a little frustrating trying to figure this stuff out. He has been through so much and will have to undergo more testing in the next month. He has diahrrea most of the time and has recently started vomitting for no known reason. He complains of tummy aches and has a hardened distended tummy from time to time. i am told this could be due to scar tissue causing the intestines to spasm. I am hoping someone has some answers or suggestions for us. I have to say that the staff in the NICU at Kaiser hospital in San Diego was so supportive they really felt like family and I owe them everything for taking such good care of us.
Sara submitted her story under Oliver and Joseph’s Story and thanks to her we are adding her under survival too. Her son now is 5 years old and loves school!
sara
Aug 10, 2010, 11:41
I am so sorry to hear about your losses. I had my little boy back in 2006, who was born 6wks prem and by c-section as i had pre-eclampsia tto so was very poorly. I din’t get to see my baby till 3days after. However as i was getting better, my baby developed NEC 5 days after he was born. waiting for a transfer to a hospital equipped to deal with my son, seem to take forever. Especially when i also was so ill also. They told me he urgently needed to be transfered as they suspected he may ned surgery. We eventually were told he would be sent to St Marys in Manchester, 20 mins drive away. I had to be transfered to the same hospital as still very poorly too.
We were then told at 1am in the morning he had NEC and it had perferated and he had less than 1% of surviving! My whole family rushed up and we all went in 2 at a time, to say our goodbyes. we were told in the room to sign the consent form. we both couldnt breathe, talk or even stand up due to how emotional we oth were. I couldnt even se the pen or paper when i had to sign, what i thought was my babys life away! The worst feelings ever.
He was then taken to theatre, our whole family were kindly put up in the family rooms, where we sat and waited. Although, i was still officially a very poorly patient, but at this time refused any treatment as i was loosing my baby! So they soon had to stop arguing with me. Hours past, then we heard people in the corridor.
He was being brought back to intensive care, we were told to wait in a family room where we were told they had operated and removed 3rd of his bowel which had died and he had stomas. To let the intestine try and recover and see if at some point thhis could be reversed.
I am missing out so many details, pain, emotions in between all of this. However i am sure you can imagine what you feel when your baby is so ill.
We were finally allowed to see him. He went through so many ups and downs, infections, blood transfussions, long lines etc. In between being in intensive care, then high dependancy. Back and too for months and months.
The stomas were not working as they had hoped so they operated to reverse them and only hope for the best as this was his last chance. So many times, the operation was cancelled coz he was just too poorly.
Months went by again, we lived in the family rooms when they were free and never left his bedside. He was then allowed to be taken off the wires for a 10min break for us to take him in the hospital pram to the canteen. Wow, that felt amazing. Even knowing that might be the only chance we ever get to take him anywhere, but an incubator.
He was then referred to another hospital, where he stayed a while. Few more operations, infections, long lines etc.
Then transfered again to another hospital where we remained for another few months and specialised in bowel problems etc. we were in an issolation room for months. So far this had been 6 months of living with my baby in hospitals. I decorated his room and wanted to give him everything i could, always fearing the worst and he would never get out of hospital or even make it. I stayed strong and just hoped he would too. I new all the staff, cleaners,canteen staff, patients and other families. Who almost become part of your life, as nobody could ever understand what you were possibly going through unless you were living it or been there. Which i would not wish on anyone. However it does happen and i am determined to try and research in to this more. Are there any research groups?
My litle boy eventually came out after almost a year and was back and too to hospital for years, doctors, dieticians. I had to order Special milk at my local chemist and feed every 3hours cause his bowels could not take more in one go.
He is now 4 and is my shining star who i never thought would make it. He has 6 scars which i want him to be proud of as they saved his life on so many occasions! He is allowed to drink normal milk and food now. He just has very bad bowels, which may never get better. But a small price to have to pay considering what he unbelivebly got through! We still go to hospital appointments and he was the dieticians star patient too. In all the years he had looked after anyone, he said my son was an exception to the rules. To go from the worst extreme to a healthy little boy now brings tears to his and all our eyes. I am eternally grateful to all the hospitals and people who helped him survive and be there for me too.
It was the hardest year of my life. But through all the heartache and pain he is still here today.
I hope you dont mind me telling you my story, there are not that many people, infact none that i know who have experienced what we have. Other than some in the hospitals at the time.
I just wanted you to know that there are a few that make it and i am so so sorry for your losses. But, the more people/hospitals are aware of these symptoms and the more research that can be done, the better. I dont want anyone to go through what you or i have ben through.
Thoughts are with you
Sara
Hi Lorien, I am glad you also found this site. I am so glad that something like this actually exists now (Thank you Elaine). As i think it is really important to be able to talk to other people who have been through the experience of a baby born with NEC. My little boy is now 5 and enjoying school! A site i can safely say, years ago in those hospitals, i never thought would happen! I am forever grateful that he is a survivor of NEC and am so sorry for all the people who have lost a baby to NEC. However, there is hope and some do survive. I am not saying it is easy, but i hope it gives other parents hope at least? As i can remember getting home 2 weeks after having owen and looking NEC up on the internet! Big mistake… not very nice facts to be looking at knowing your baby is lay in hospital and these things may happen? Which they all did and nothing could of prepared me for! However, 5 years on Owen is no longer under the cxare of the dietician or the hospital. He occasionly has bad tummy aches, which may just be linked to the adhesians/scar tissue from the operations maybe? Also, he always has diorehea and can go to the toilet upto 4/5 times a day on a bad day (and always when you go out for tea!). However, a very small price to pay. We dont stop Owen from eating anything, we just make sure he has a good balanced diet and hope he remains healthy for a very long time. I hope your son too will be ok and the pains go away. Always go to the doctor for advice and if you need more info ask them to refer you back to the hospital again as these things can not be left and shouldnt have to be. There are amazing people out there who can and should be able to help you. Take care, thoughts are with you. Sara xxx
There is a new story submitted “Baby William” he is fighting NEC right now. Any support on the story of him can help.
Thanks everyone!
Please read Baby Sam’s story, he is new to our world and fighting NEC. Please send support anyone, everyone.
Please read these baby survivor stories just added:
Avalon, Cessely, Kevin and Jami, Breonna’s stories.
Together we can hope!
I gave birth to twins at 27 weeks in October 2010. My daughter Nancy weighed 1lb 14oz, my son 2lb 3oz. At 15 days old my daughter developed NEC. She was transferred to a different hospital equipped to do surgery should she need it. Within 12 hours she was considered too sick for surgery and was on an oscillator as she was so swollen the ventilator couldn’t inflate her lungs. 3 days later and just clinging to life she was taken to theatre to remove the infected bowel. The surgeon gave her a 50% chance of surviving the op. She did, but the news was bad. She had only 15cm of small intestines left the rest had died. The surgeon said 15cm wasn’t enough for life and that she needed a minimum of 20cm. We were devastated. We stood over her incubator not sure whether to will her to fight or give in.
We discussed turning off her life support machine, the hospital felt it was too soon but advised us to place a ‘Do not resuscitate’ on her.
Nancy clung on and a few days later rallied, she was still horribly swollen, almost twice her size, but pink rather than purple. She had a broviac line inserted and two stoma’s. Day after day Nancy slowly improved, the DNR was lifted and the plan became to sit and wait. The surgeon wanted to wait 3 months and see if, when he operated again to reverse her stoma’s, she had grown any more bowel. So on the 13th of January she went to theatre. 4 hours of surgery later we were told Nancy had grown an incredible 25cm more giving her 40cm. We were ecstatic!! She had a chance!
4 months later she was weaned of TPN and came home. She is on a special formula, is unable to suck so is NG tube fed but is growing and despite a few developmental delays she is thriving.
The whole experience was exhausting, terrifying and traumatic, having 3 children under three left us feeling guilty as we were unable to all be together at any one time. The twins were in different hospitals and only parents were permitted to visit.
Watching our tiny baby fight for life whilst we could only stand and watch is something few will ever truely understand. I don’t know what the future holds I hope she will live as fulfilling and as ‘normal’ a life as possible.
my daughter was born 23 and 0, she was diagnosed with NEC last week just had surgery friday, everyone feared she would not survive.all of her bowel was pink, nothing was dead but they did removed a part of her large intestines and half her colan because it was not getting enough blood.. they said her surgery and her fighting the infection was better than they ever anticipated. tonight however a doctor came in and told us we need to think and revisit if we want to continue to support her, that he doesnt believe she will have any quality of life. but she has been fighting since day one beating all the odds put against her. i believe in God and i know he is faithful but ill be honest i struggled hearing the doctor tell me that, i really did. i cant wait til we are years down the road and this is just a distant memory
I will pray for your baby. Keep your faith, you will go through many ups and Downs in this journey with
Your sweet baby girl. Elijah had a ruptured bowel and similar surgery two in fact. There was a point were he
Was not expected to live. He turned 3 two weeks ago. Stay by her side and let her feel your love, talk to her
and hold her little hand every moment u possibly can.
I believe that love gave him the strength he needed to survive. Please keep us posted. You will be in
my thoughts and prayers.
My beautiful son Landon Stephen keil was born feb.15 2012, three months early at 24 weeks gestation due to incompetent cervix. He has been a trooper through everything so far he has perfect brain scans, great lungs strong heart and organs only he’s been effected with NEC. Landon has been through two surgeries to remove perforated bowel and doesn’t have enough to reattach currently. We are waiting for him to grow off of TPN so his intestines can heal and grow also, in the attempt to reattach his bowels again. Landon wants to come home and I have strong faith he will. Trust god he will bring our babies home don’t lose faith and pray!
Landon deserves the world and we will pray that everyday gets him closer to coming home healthy. Keep us updated, bless.
Elaine
Or little baby girl was born with c-section 11 of March 2009 at 24+5 weeks or in Sweden we say 25+5. 725 grams and 32 cm long. They had a hard time getting her out of my stomach so they had to pull extra hard on her leg. So when she got pains they thoght it was broken, it wasn’t so they x-rayed her stomach and realised she had NEC. I was still poorly after the c-section and her doctors came in to my room and told my husband and I that she had NEC and needed to go to another hospital where they could operate on her. So three days old they flew her to Stockholm ( we live in Sweden) and I got worse so I had to stay in the hospital but my husband took the car and drove there.
When she got there she was rushed into theatre and had her first surgery. Then a couple of days later she had her second.I was then on my way to Stockholm in an ambulans. My husband met me and told me that the surgery had gone fine.
Two days later she got worse and needed a third surgery and the doctor then realised that part of her small intestines had died and the duodenum. He took out nearly evrything of the duodenum because it was dead but he had to save some of it that you need to survive and 10 cm of the small intestine.
After that she had a fourth to close her stomach because they had left it open to be able to see the intestines.
She got better and better but a month later she got really sick again but that time it was a sepsis. She survived that and the 23 rd of June 2009 we could take her home to her big sister.
We gave her the name Vilja and in Swedish that means will power and to have a strong will, fitting isn’t it!
We went to see the doctor a year ago and he told us he never thought she would survive and that she is his little miracle. He also said that you don’t survive something like that.
Now she is 3 years old and healthy but very little and she is our little miracle too. Now I am sick and his hoping for my own miracle but that is another story.
Our twin daughters, June and Halle were born at 32.3 weeks. I had preeclampsia and had them via emergency C-Section. I literally began breast pumping as soon as I was out of surgery, and continued to for 15min every 2hrs. It felt like the only thing I could do since I couldn’t see them. (I had to be able to sit up and swing my legs over the edge of the bed and get in a wheelchair) We chose to give the girls donor breastmilk instead of formula since my milk had not yet come in.
5 days after they were born, our girls were breathing on their own, we were smiling again and talking light heartedly to our nurses. My husband left to go sign papers for leave from work, 3hrs away. That same day June began to vomit orange liquid, I immediately asked our nurse if it was blood, she checked her diaper and there was blood in it. She signaled for help.
I began a continuous stream of prayers. I remember a crowd of nurses and doctors surrounding her, trying to get a blood sample and to keep her concious. I called her father and told him he needed to come back, crying, that she was sick. He told me she would be okay, but turned around to come back after he realized how serious it was. My sister came to be with me. The doctor told me they wanted to send her to another NICU where they had surgeons that could help her, but she might not make it during transport. They knew she was bleeding internally, but did not know for sure from where, they believed it was NEC.
She was given antibiotics, but her best bet was to have surgery withing 24hrs. She also needed blood since she had lost so much. I signed everything I needed to, with Chaplans on either side of me. I told the doctor, choking through my tears that if she wasn’t going to make it, I just wanted to hold her. I wanted her in my arms instead of dying while being operated on.
I followed the emergency transport team who breathed for her with a blue inflating bag and stared at her through my swollen eyes from the front seat. We arrived at the next hospital and I had to wait while they got her situated, her dad arrived and we were ushered in to look at x-rays of her intestines. The doctors explained that her intestines had a serious infections and were dying, they were falling apart and gases were rising up into her diaphram. They explained that the abundant cloud-like white on the illuminated x-ray were the gases. I almost fell to the floor.
I prayed, to God, Please let me keep her, if only for a little while, please comfort her, please heal her Lord, please Lord if it is Your will please let me keep her. Over and over and over. The nurses explained she had been given Morphine for the pain, pain was something I had no idea she was experiencing. I felt my insides crumple up. There was nothing I could do for her. I was powerless. She was lethargic, completely limp. Her dad and I sat next to her isolette all day, reading her Dumbo and other books we could find in the NICU, held eachother and cried.
I was so grateful to have their grandmother stay with Halle while we were with June. A Chaplan, Jill came to ask if we would like to ask for a blessing for June and we held hands and prayed for her aloud. The radiologist took more x-rays and before the last one they were going to take before admitting her to surgery, the doctors were suprised, the gases had dissopated. They were going to wait, and see if she would continue to get better, they said the antibiotics they had given her were working well. I felt light headed, like my feet were lifting off the floor. I was so overwhelmingly happy. June’s nurses from the other hospital even called our current one to check on her.
She did continue to get better and did not need surgery. The doctors warned us she might have blockage, and further long-term complications. June does not have any of that. Later one of our wonderful nurses told us that June was lucky to recieve donor breastmilk instead of opting for formula and it had improved her chances.
I am still happy everytime she has a bowel movement. I don’t know why her outcome was what it is, I still have nightmares about when she was sick. Sometimes I lay with her after she has fallen asleep just to hold her. I now go to the Red Cross to donate my blood every three months. My heart is with all the parents and babies experiencing this, and with the parents, siblings and family who have lost their children to NEC.