Isla-rose hider -pettit was born with chd of severe dilated cardiomyopthy and valve regurgitation . she gave me 8-1/2 wonderful months . drs were amazed she survied a day . athanks to all for ure support and work we are all tuely amazing . and thanks for letting me share her with people. Isla and freya wher born on 23rd march 09 MY BEAUTIFUL TWINS Isla-Rose At 37 weeks i was my labour was induced because my body was having hard time holding the girls so my waters where broke with a cream and i was in labour after a minute took very quick and i was in labour having contractions for 1-2 mins apart for 8 hours but only 3cm dilated . Then the difficulties came in twin 1 (isla) heart rate kept dropping and raising very quickly so the drs decided i need to have a emergency c section . iIwas rushed down to theatre where the girls where born Isla 4lb 10 and Freya 5lb11 at 8 56 and 859pm
Isla was born with the cord around her neck and took longer to respond than freya , the girsl where taken off fed , dressed and cleaned by thier dad while i was in recovery , At around 11pm i was taken onto the ward to see my babies freya was still awake so i had a hold but isla was sleeping peacefully soo i thought i would have cuddle in the morning, so i went off to sleep as my babies where safe , i was awoke at 248 i remmber it soo clearly isla had been taken into the special care baby unit because she was not feeding very well so she was given a ng tube , but seemed to be still struggling with her breathing ,so they gave her a ecg and pulse oximetry teat and found that her heart rate was still very high , she was then moved to picu where she needed assistance with her breathing and also isla heart was failing we where told at our hospital they did not have the care she needed so she was moved to the royal brompton heart hospital in london , where i stayed with her sister still recovering from my operation and freya needed to to have a echo to see if they may be a problem due to isla having a problem freya was born with two holes in her heart … So I was told that Isla was taking it very badly and she might not make the journey so i said goodbye to my baby and prayed to god to keep her safe and i would be with her soon . Its Thursday the girls are 3 day old and i only have freya with me and rob is in london with isla who is bieng assisted with her breathing at 80% oxygen and 20% isla and on a cocktail of medicines to keep her stable and having lots of test done and any may echo where it was the dx that Isla had severe dilated cardiomyopathy which means the hear it extremely big and the lining around isla heart is very floppy and thin and her heart is very over-active and she aslo had mild valve regurgitation which mean she she pumps some of her blood into her left ventricle which sends bloods too the lungs . Which mean theres nothing u can do for it not operation can fix it only transplant and she was too small any way and the odds are quite low off a dmc baby to survive the procedure 
from then on after me and freya arrived isla was getting better she was coming off the ventelator slowly and recovering we where told we could go back to our local hospital they where amazed at her she was doing very well recovering well from her heart faliure , we arrived back at our local hospital on the tuesday and isla was gaining weight slowly and on a mixture of medicines captori frusimide l,spirolactone, dalavit, iron , asprin , she came off the ventelato rat 12 days old she was fighting to say with us. soon enough we where getting ready to take her home all we had she was 3 weeks old when we took her her home is was the most nervous days of my lifes she was on a ng tube and i learnt how to do all her meds and cpr just in case . After another 2 weeks off bieng at home and many echos and esgs later the ng tube was removed it was howing that she was getting better she was growing into her heart which can happen so she is growing nicely and we are amazed and happy news too freya holes in her heart have closed,life was getting better , she was beating the odds so the girls are growing up very nicly we are having our routine visits to the cards all is going well and we get a letter from great ormand street childrens hospital from the speacialist there he wants too see isla fro a check , so we go its october 16th and we are are told after a long day of test for isla that isla heart has got extremly bigger in leymens terms isla now 15lb her heart was 6 times bigger than ment to be she was getting weaker and she could deteriorate very quickly and our option was to get her prepared for a heart transpalnt but sll we could do is feed her up and give her beta blockers , so thats what we did thats all we could do Isla awas a happy child lived life to the full too look at her you would have not known she was poorly she did not look it , or act it she was always very very happy and lived life too the full she was a loving sister, daughter , granddaughter and family member
On 10th of december isla was admitted in to hospital after she became very sleepy and had caught a cold and cough and bieng very sick , Isla had caught broncitus and rhino virus . She was kept in the ward for three day but she was slowly getting worse and now needed assitant with her breathing and kept on a constant , but she was not holding her feed and losing weight fast but was till very happy aware of everything going on around her the nurses called her smilsa all she did was smile but yet she was soo poorly., on monday she was taken in to intesive care where she was bieng assisted with her breathing and our card dr came to us and made us all ware of what was going on and they where going to try some antibiotics to try and help her with the infection and may have to put her on full ventilation and put her in a coma . \Isla took to the the oxygen well and was very stable so we where sent home after being in the same clothes for 3days and needed to tend to her sister she needed her mummy too .. On tuesday i was back at the hospital after rounds and stayed all day isla was doing great responding having cuddles with mummy getting better we thought back feeds , so it got to 9pm isla sleepy peacfully we went home .. its was 9.46 i remember it to the minute i got a sick feeling something ( a mother instict ) was not right i could not find my phone so i sent rob back to the hospital just to check i needed him to for my sanity freya was asleep so i stayed home.. Rob arrived at the hospital and called me straight away isla had not taken to the antibiotics very well and was slowly dieng and posioning her lungs with carbon dioxide they where just about to call as rob arrived , i went up to the hospital with my mum and we had to make a choice it was either isla slowly poison herself or take the small chance that she will take to the coma , so i prayed to god that he keep her safe and if she needed to be with him then he take her when she is not in pain and i said tto my baby to take care and if she want to be strong and stay but if her heart is not strong enough she needs to be with angels , so i made the the choice to try to ventilate her and put her into the coma … Isla died at 1 46 am wedneday morning 16-12-09 after 35mins off them trying to bring her back she put up a very good fight till the end and was very happy and i was blessed to have her , i have learned more in the 10 months of having children than i knew in the whole 23 years of my life . i am very proud of my children and thankful for everything they have givem me and now i am going to tell isla story to make people aware that chd is a big problem in this world
- Dilated cardiomyopthy only affect 2 in 10,000 babies
- Dilated cardiomyopathy (DCM): It is also known as congestive cardiomyopathy. Dilated cardiomyopathy is most notable for an enlarged heart that contracts poorly.
- Dilated cardiomyopthy can lead to sudden death 4000 babies donot live to see thier 1st birthday
many thanks for reading our story lets make people aware of our babies
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