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Anastasia’s story

July 12th, 2008 by Cristina Rodriguez

My princess Anastasia Elizabeth was diagnosed with NEC back in may. Her bowels actually perforated and all her meconium had spilled out into her abdominal cavity. Luckily her doctors caught it before any part of her intestines died.

Upon doing a small procedure to remove the meconium it was discovered that she had roughly 30mls of meconium and fluid inside her abdominal cavity. It was so severe that simply making the incision allowed it all to come gushing out of her. She had a penrose drain put in and it drained any fluid that hadn’t already been removed. She recovered beautifully, although her belly did remain at about 23cm-23.5cm which for a preemie her size I thought to be quite large. You see Anastasia was born at 24wks and 6days. She only weighed 1lb 13oz at birth and measured 12in long.

This past Sunday July 6th her belly blew up yet again, bear in mind it had never really gone back to its original size (it remained anywhere from 23cm-23.5cm to 25.5cm). She also threw up and took the NG tube out of her nose. Up till then she was doing great. She was tolerating 10mls of food every hour, she was gaining weight significantly, she was off her intubation tube and down to a nasal canula, she was urinating and defecating as she should’ve been. Come Monday morning things just got worse. Her belly got even bigger and she was struggling to breathe. She was rushed into emergency surgery after it was discovered that there was free air inside her intestinal lining. Upon arrival my husband (her father), my mother and myself were told that she did indeed have the disease again, but unfortunately it got her harder than it had prior. All her intestines had died and there was nothing they could do for her. We were told that we could keep her on life support for a few days, but it would simply be more painful for her because the infection would just begin to spread throughout her little body and shut down all her vital organs. We made the decision to end her suffering. All our family was present as we baptized her and soon afterwards she was taken off her ventilator, her leads and her IV’s. She was brought into a family room where us and both our immediate families were all waiting. Our beautiful princess took her last breaths in her father and my arms. She went peacefully. She did get to see us all one last time as he woke up when she was brought to us. I will never fully understand why it happened to her again. I realize it is no one person’s fault. I just wish we had more time or at least some sort of sign that would’ve told us her organs were dying inside her. Perhaps then she would still be with us.

Becky’s story

June 10th, 2008 by Becky

I am reading the other stories on the website and I am reminded of just how lucky I am. If there are people reading this sight for information I hope that they can read my story and know that there is hope.

My mother delivered me in March of 1974. I was 10-12 weeks premature and weighed 2lbs 1oz. I developed NEC and was rushed to a local children’s hospital. The doctors told my parents that there was an operation that could be done but that I had a very small chance of surviving with it and would die with out it. I had three operations and stayed in NICU for 4 mo. The doctors were amazed that I survived (I was the first one at that hospital to make it) but cautioned my parents that I would be “retarded” because I was so premature and as I got older I was told I would not be able to have children because of abdominal scar tissue. I have had to go back for several operations do to blockages, but other than that I am a healthy 34 year old, graduated with honors and have a healthy 6 1/2 year old son.

I hope that my story can give hope to others facing what my parents did!!

Jayden’s story

June 6th, 2008 by Tanya Cadd

HEARTBROKEN
BY TANYA CADD

This is a story about my little man.
Jayden Dareen Manikiza
17.02.08 – 05.03.08 Age 17 days old.

My name is Tanya Cadd, I had wanted a baby for ages I used to always go to the doctors for pregnancy tests and what did they say… Its negative. I will never forget the 18th of august 2007 I went to the doctors to have a pregnancy test and finally they said it was positive I couldn’t stop smiling I was ecstatic… I’m finally pregnant I thought something id always wanted, I had regular scans and doctors appointments everything was fine until one day I went for a scan and Jayden’s heart rate was going up to 500 beats per minute when it was meant to be at 120-160 max. This was way too high so I was sent to the john radcliffe hospital in oxford. I was started on a drug called digoxin to try to slow Jayden’s heart rate down, I kept traveling to oxford every two days for roughly two weeks. nothing was getting better
and Jayden was not moving much in my belly so on Friday the 15th of February I was kept in oxford and monitored in the heart ward… Sunday the 17th of February came, still in hospital I was due a scan. This revealed the worse… jaydens heart had not slowed down at all and he was getting a bit tired and stressed. so they said they would have to deliver him.

SO HAPPY TO BE A MUM…
on Sunday the 17th of February 2008 two days before my 18th birthday they delivered my 1st child. what a great early birthday present ay! he was gorgeous brown hair, a big smile, long fingers and toes so cute, everything you could ever ask for I had, he weighed 3lbs 10 1/2 OZ. and 43cm long. quite big for a gestational age of 28
weeks and 4 days. He was perfect! Jayden was taken to the Neonatal intensive care unit and after I was taken back to the ward I was given a photo and told I would be allowed to see him when the feeling of my legs came back, seeing my new born baby properly for the first time being able to touch him through the incubator doors was fantastic I was so happy.

The next morning came and we were transferred to Northampton general hospital… As I live in northampton we were taken in separate ambulances but when I arrived I went straight to see Jayden in the special intensive care baby unit. over the next week things were going really well they managed to settle his heart rate down with drugs it had the odd few minutes where it would go up to like 240b.p.m but was not major, Jayden was taken off the ventilator and his food amounts were increasing the only thing wrong was he had diarrhea and this was checked for infection and they said it came back fine… I was so happy to know my little man was doing so well I even got
to dress him as he was coming off most of his lines. I will never forget the 1st day I dressed him he looked so cute in his little blue suit.

EVERYTHING WAS PERRRRRFECT UNTILL…
On the 4th of march I rang the hospital and double checked it was ok to go and visit Jayden they said sure that’s fine, at 4.30pm I arrived and I was greeted by a nurse she took me into a room and said Jayden was not doing so well and that there were doctors in the room trying to stabilize him so I could not go in… I waited what seemed like hours for them to get him stabilized and then when I seen him he looked so pale and lifeless, his belly was bloated and he was also back on the ventilator and had a lot of lines back in him I asked what was going on and that is when they explained to me that Jayden had developed N.E.C I had never heard of it before and was not aware of it. In northampton they did not have any surgeons that could operate and deal with N.E.C so they were trying to stabilize Jayden so we could
transfer him to oxford, London or leiester hospital where they could operate but before they done that they would have to get Jayden stabilized and fit for
transfer… over the next few hours things got worse. Jaydens belly was getting more swollen and he was needing more oxygen, later that night Jayden was fighting for his life and I can remember whispering to him please Jayden come on his heart kept stopping and starting and I remember looking and the monitor and it said 0. I was heart broken I just started crying my eyes out that night was and is and will always be the worst day of my life I just wish I could of stayed in oxford hospital and maybe my little angel would still be here. Jayden fell asleep at 2.20am on the 5th march he was only 17days old. There was so many things I was going to do with my baby. When we meet again we will do those things. if anybody would like to contact me regarding N.E.C please email me at lil-princess-double-oh-7@hotmail.co.uk

I would just like to say I think there should be more care taken in s.c.b.u in
hospitals with infections and there should be regular x.rays and tests taken then maybe just maybe it wouldn’t have been to late. Also I think every hospital should have at least one surgeon who’s specialized in different problems.

Jayden we will always love you, you are my 1st baby and always will be I will
never feel the same for you as I do anybody else you’re my special little man and all the memories I have of you I will cherish for the rest of my life and I cant thank you enough for making me a mummy. Love you son X

THANK YOU FOR LETTING ME SHARE MY STORY AND I AM SORRY TO ANYBODY WHO HAS LOST THEIR CHILD TO N.E.C I KNOW HOW YOU FEEL WE HAVE TO BE STRONG AND REMEMBER OUR BABIES WILL ALWAYS BE WATCHING OVER US AND WILL ALWAYS BE OUR LITTLE BABIES XXX

Isabella’s story

January 19th, 2008 by Louise Wessel

Isabella was born via emergency C Section at 37 weeks due to me having severe pre eclampsia. She was born on 07/07/07 – a lucky birthday they tell us. HA! There has never been anything lucky for Isabella. They told us although small for a term baby, she was perfect and was kept in the special care nursery just for feed monitoring. The next morning they told us she could stay in my room until I was discharged as she was feeding fine and doing so well – that afternoon she threw up 2 breastfeeds in a row, the nurses asked if they could try her on Karicare – in my morphine induced state I agreed – what I believe to be the worst mistake of my life. throughout the afternoon she continued to deteriate and then started passing bloody stools that evening and her belly was all blown up, plus she couldn’t keep her temp so they placed her in a humidicrib. By morning they had started triple antibiotics and told me to call my partner as she was being transferred to the Mater NICU where they could take better care of her. Before we left the pedeatrician told me not to be so upset and to calm down as it was probably nothing serious or life threatening. I wish I could go back and see him now to tell him how wrong he was, but due to all the morphine I was on I wouldn’t recognise him if I saw him on the street!

By the time I was discharged and arrived at the NICU our little girl was so pale she was see through and her stomach was hard and puffed up, she looked like her skin was almost green. She was intubated and the NICU doctors and surgeons took us into what we now call ‘the bad news room’ to show us the XRAY of free gas in her stomach and told us her bowel had perforated in several places and she was so septic there was no point in operating as she had no chance. She was 36 hours old and there was no way I was going to let my baby die. Luckily the surgeons agreed to take a risk, as without the surgery she would have died within a couple of hours. During most surgeries with NEC babies they remove the necrotic or perforated bowel and usually create a stoma to let the bowel they have operated on have a chance to heal and recover. Unfortunately Isabella’s bowel did not have any distinctive good or bad bits, it all looked dead, so they just took the best bit of small bowel they could find and then created a stoma 7cms below the bottom of the small bowel. they told us she probably had no chance as the rest of the small bowel and the large bowel would probably die off. They cleaned her out then took her back to the NICU hanging on for her life. They told us to just take each day as it came.

She had a rocky 14 days post op (renal failure, brain bleed, septecemia), but came off the ventilator when she was 16 days old. Just as we were to be transferred out of the NICU to special care nursery her blood cultures came back indicating she had a staph infection from the line she was receiving all her nutrients through (as she was not receiving any feeds orally as they were still too scared she was too fragile). Finally Isabella graduated to special care on oxygen, TPN (food via an IV), a stoma, on triple antibiotics and with severe jaundice. I know the odds are horrible with NEC and am so glad I had never heard of it, and that family and friends would not let me research it all until she was out of the NICU, as they all had looked it up and were horrified.

Isabella has had so many problems because of the NEC – poor weight gain, numerous staph infections from her line she receives the TPN through, liver disease from so many antibiotics and so much TPN, herneated bowel. She has palsy in her left side from a brain bleed when she was at her sickest and also epilepsy from the bleed. She has had to have so many lines in her for the TPN they cannot find vains on her and she has to go to the operating theatre every time she needs a new line now. She has damage to her throat and larynx due to being intubated so many times. When she was 5 months old they operated on her to remove any damaged bowel and close the stoma, they ended up finding her in a much worse state than they imagined. her entire large bowel except for 7 cms was completely destroyed by the NEC, as was 6 cms of her small bowel, and her appendix and been necrotised the only thing that remained was a small fibre in the place where the appendix should be. She now has 2 stomas, and what is called ‘short gut syndrome’ and will have problems for the rest of her life (poor weight gain, malnutrition, dehydration to name a few) After this operation the bacteria that should be on the inside of the gut got released to the outside, and all the dead bowel got stirred up which caused her to be septic and we almost lost her again. They gave us an hour to be with her before all the machines were turned off as she was so septic, her blood tests indicated her remaining gut was dying off and they could not keep her sats above 70% even though she was on 100% ventilation via high frequency, and her kidneys were failing. Our little fighter wouldn’t have that though, and started saturating higher and weeing again, just as all our family arrived to say goodbye!

I feel that there is not enough awareness of NEC, especially in term babies, so the nurses didn’t even think that all her vomiting and bloody stools were caused by it. If we were at a hospital with a NICU perhaps she would not have gotten so sick before something was done. Isabella is 6 and a half months old and has just been discharged from the hospital last week for the first time ever. She still cannot feed orally as she has lost her sucking reflexes and has 2 stomas, and only weighs 4.6kgs. She will be going back on hospital in a month to have one of the stomas closed, the other will remain for at least 10-15 years as she needs to grow before they can connect her up, as the NEC destroys the rectum and sphinctor also. This is the first site I have come across where I could share Isabella’s story, and I thank you for letting me get it out. With all the things wrong with her and the horrible times we have had, there is no way we would trade it, as she is here with us. I am so sorry for all those who have lost their little angels to NEC, or as some of the doctors call it – the freight train disease. If you would like to see any photos of Isabella, or talk anything NEC related (I could almost write a book!) please contact me on lewessel@hotmail.com.

Daniel’s story

January 17th, 2008 by Tyrone Curtis

My son daniel died of nec it was the hardest thing i ever went through I thank you for your story.