Isla-Rose was born with Dilated Cardiomyopathy and Valve Regurgitation.
23rd March 2009 – 16th December 2009
Isla-Rose Hider-Pettit was born with CHD of severe dilated cardiomyopathy and valve regurgitation. She gave me 8-1/2 wonderful months. Drs were amazed she survived a day. Thanks to all for your support and work we are all truly amazing and thanks for letting me share her with people. Isla and Freya were born on 23rd March 09 MY BEAUTIFUL TWINS Isla-Rose. At 37 weeks it was when my labour was induced because my body was having hard time holding the girls so my waters were 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 rising very quickly so the Drs decided I needed to have an emergency c-section. I was rushed down to theatre where the girls where born Isla 4lb 10 and Freya 5lb11 at 8:56 and 8:59 pm. Isla was born with the cord around her neck and took longer to respond than Freya, the girls were taken off to be fed, dressed and cleaned by their 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 so I thought I would have cuddle in the morning, so I went off to sleep as my babies where safe, I was awake at 2:48 am – I remember it so 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 an 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 were 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 have an ECHO to see if there 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.
It’s Thursday the girls are 3 days old and I only have Freya with me and Rob is in London with Isla who is being assisted with her breathing at 80% oxygen and 20%. Isla is 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 heart is extremely big and the lining around Isla’s heart is very floppy and thin and her heart is very over-active, and she also has mild valve regurgitation which means she pumps some of her blood into her left ventricle which sends bloods to the lungs. Which means there’s nothing you can do for it – no operation can fix it only transplant and she was too small anyway and the odds are quite low off for a DMC baby to survive the procedure. From then on after me and Freya arrived – Isla was getting better she was coming off the ventilator slowly and recovering; we were told we could go back to our local hospital. They where amazed at her she was doing very well, recovering well from her heart failure, 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, aspirin. She came off the ventilator at 12 days old she was fighting to stay with us. Soon enough we were getting ready to take her home (she was 3 weeks old when we took her home) It was the most nervous days of my life 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 being at home and many ECHO’s and ECGs later the ng tube was removed; it was knowing 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’s holes in her heart have closed, life was getting better, she was beating the odds so the girls are growing up very nicely we are having our routine visits to the cards all is going well and we got a letter from Great Ormand Street Children’s hospital from the specialist there – he wants too see Isla for a check, so we go its October 16th and we are are told after a long day of tests for Isla that her heart has got extremely bigger, in laymens terms Isla is now 15lb her heart was 6 times bigger than meant to be. She was getting weaker and she could deteriorate very quickly, and our option was to get her prepared for a heart transplant but all we could do is feed her up and give her beta blockers, so that’s what we did That’s all we could do Isla was 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 December Isla was admitted into hospital after she became very sleepy and had caught a cold and cough and was being very sick – Isla had caught bronchitis and rhino virus. She was kept in the ward for three days but she was slowly getting worse and now needed assistant with her breathing and kept on a constant, but she was not holding her feed and was losing weight fast but was still very happy, aware of everything going on around her. The nurses called her smiler – all she did was smile but yet she was so poorly.
On Monday, she was taken in to intensive care where she was being assisted with her breathing. Our card Dr came to us and made us all aware of what was going on and they were 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 were sent home after being in the same clothes for 3 days and I 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 sleeping peacefully we went home. It was 9.46 – I remember it to the minute. I got a sick feeling something was not right (a mothers instinct) – I could not find my phone. So I sent Rob back to the hospital just to check and 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 dying and poisoning her lungs with carbon dioxide. They were 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 poisoning herself or take the small chance that she will take to the coma , so I prayed to god that he would keep her safe and if she needed to be with him then he take her when she is not in pain and I said to my baby to take care and if she wanted to be strong and stay but if her heart is not strong enough she needs to be with angels. I made the choice to try to ventilate her and put her into the coma. Isla died at 1:46 am Wednesday 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 given me and now I am going to tell Isla’s story to make people aware that CHD is a big problem in this world.
Written by Karla Hider
Information about Dilated Cardiomyopathy
- Dilated cardiomyopathy 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 cardiomyopathy can lead to sudden death 4000 babies do not live to see their 1st birthday
Karla Hinder has given CHD-UK permission to use photographs for this page.