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.

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