Isabella Carmen Edwards

Isabella’s Story

Born April 27th, 2002

Isabella was born at 37wks 27/04/02 she weighed 6lb2. She came out with the cord wrapped around her neck and was blue but they got her breathing and the next day we were out of hospital and celebrating Isabellas brithday and mine. I just knew something wasn’t right, her breathing was very fast,she was having trouble feeding, slept all the time and her fingers and lips were blue, so i kept ringing the midwife and she would come round and say oh she’s fine, all babies breath fast and the blue around the lips was just wind, i was just being a first time paranoid mum.

When Isabella was 5 days old we couldn’t wake her up so we rushed her to our local hospital and was told its just jundice but she will have to stay in over night under the lamp. I went home (i thank god i did) as wayne couldn’t drive he stayed. He told me that her breathing got worse and he started shouting at the doctors to do tests. The next morning i go in all happy to see my baby with the photos i just got developed in my hands, walking towards the room i knew something wasn’t right there were doctors everywhere and wayne looked very upset. They had taken an x ray that showed Izzy’s heart was 3 times the size and her liver was inflammed. then the ambalance arrived to take her to GOSH she stopped breathing on the way but they got her back again. At GOSH we were told she had a coarctation of the Aorta and had to have a heart operation the next day, i thought i was going to lose her and couldn’t get my head around what was going on. They told me after her op she would be put on a ventilator and after 12 hours they could take her off of it and then she would be moved to the heart ward, that never happened she stayed on the ventilator for 10 days and was getting worse and to top it all off she caught MRSA.

They took us into this room (which everyone named the bad news room) so i knew it wasn’t looking good. We were told that they had dicovered Izzy had a very rare brain disorder (The Vein Of Galen) and she was so weak from her heart op it was best to turn the ventilator off as she was probaby brain dead anyway, also that they didnt know anyone who could do an operation for this. We didn’t turn the machine off we got her christened and comfirmed and started praying for a miracle. The next day they came and told us they had found a surgeon in Paris and if he says he will operate she will be flown out there straight away but if he says no then that is it we will have to turn the ventiltor off.I felt like they had just vipped out my heart. Two weeks later we got the answer we wanted Izzy was going to Paris so we were rushing round trying to get a flight Izzy a passport, Izzy was flown out by air ambalance and we got a flight the next day. When we spoke to Perrie he said Izzy was very small (i think she was about 5lbs) and very weak and thought she only had a 5% chance of making it. But our little fighter made it and when she was well enough she was flown back to GOSH but she was still in heart failure and very ill.

At 5 months old she was somehow back in the local hospital and going down hill fast they had her on c pap and she kept stopping breathing and we thought thats it no one was doing anything the nurses were so worried but there was no beds avalible at GOSH. I got in touch with Vicky who rang us up at the hospital trying any way she could to help us, and the next day we was told Izzy is flying out to Paris 7.00am. Once again we were rushing about trying to get a flight as Izzy was sent by air ambalance. The operation went well she pulled through but 4 hours after started to have seizures but they managed to stop them and when she was well enough she was sent back to GOSH.

When they felt she was well enough we went home for the first time but the happieness was short lived 1 week after Izzy had what looked like some sort of fit her eyes were rolling so we rushed her back up the hospital and they discovered Izzy had gone blind and her eyes were set looking down. Izzy was rushed to GOSH and had MRI, EEG loads of test but they didn’t know why it had happened or if she would see again. It lasted for 3 months and slowly she got her sight back and managed to move her eyes again. Aventually we were sent back home and everything seemed better but near her 1st birthday she started crying alot . When she was in her car seat in her buggy any little bump would make her scream. Our doctor said she is probably just teething so we put it down to that.Until we noticed her left side had gone weak and she seemed to be getting weaker all in one day. Once again up the hospital. When the saw Izzy they thought she had had a stroke and that day was sent back to GOSH.

When the Mri came back it showed Izzy had brain damage and she wasn’t the same little Izzy she just sat in a special chair starring on reaction to anything , it broke my heart to see her like that. Then she was sent back to Paris where we were told Izzy’s jugular vein had thrombosed and there was too much blood in her head that wasn’t reaching parts of the brain and thats why she got brain damage. So she had another op and it was amazing how after the op she could smile again, she wasn’t how she was before her right arm was out of control and she would hit herself in the face as it wouldn’t stop moving and she couldn’t move her left side at all, but she was smiling and thats all that mattered.

We took her home for her birthday and a month later i had Katria my second little girl. Katria was a gift to Izzy as she started progressing Izzy would try to copy her and i think it helped Izzy alot the doctors think Izzy is now using other parts of her brain to compensate. Everything was going well but in june 2004 she had a very bad seizure which lasted for an hour and a half (that we know) as it was during the night. everything was going into spasm her face everything she was going blue and struggling to breath, i thought i was losng her again i didn’t realise she was having a seizure.

So back to GOSH and Izzy was put on epilim and when she recovered was sent back home. Once again Izzy was doing well then had another big seizure january 2005 and when they did the MRI they discovered she had a bleed on the brain. So she was sent to Paris in August for another op which went well.

March 2006 Well today Isabella is still doing very well. She loves life and everyone she meets and is the happiest little girl i know. She will be 4 next month. She can’t walk or crawl (she bunny hops) and is behind mentally (in her understanding mainly ), but she is always talking, singing and laughing and as much as would love her to walk and not to have these problems i love her so much and wouldn’t change her for the world. Katria is still her little helper and she also has another little helper her new sister called Alina who is 4 months old and very cute.

***Updates****

Nov 2007: Izzy had another big seizure and had to go back to Paris for another op we was very worried and was told both Izzy’s jugular veins had now thrombosed but that her brain and made other paths to get to her heart and her body.
The operation went very well but sadly that was the last time we saw Pierre as he passed away (R.I.P you are always in our prayers) we will always be so thankful to him for saving Izzy so many times.

2008: Izzy was in a mainstream school that wasn’t happy giving her rectal diazepam if ever she had a seizure (she never had one at school and only has them once-twice a year when she is asleep).So we had to change her emergency medication to buccal midazolam (oral) Izzy had another big seizure at home, i didn’t give her the full does when she was fitting as i was scared so i waited until they told me the paramedics were near, she instantly stopped twitching and i handed Izzy over to them so i could get dressed to go to hospital i tried to go back into the room but they wouldn’t let me in. Wayne was screaming she’s gone, he had burst in the room and Izzy had had a respiratory arrest her heart had stopped and the paramedics were banging her chest to get it going again. The next minute they rushed out of the house with Izzy telling us to meet them at the hospital.
We really did think we had lost Izzy especially when we arrived a the hospital before them.
But Izzy arrived breathing but still fitting, it turned out Izzy had a allergic reaction to the buccal midazolam and we was very lucky i didn’t give her the full dose and the paramedics came so quickly and did what they did.
Izzy recovered well and we pulled her out of that school and now she is in a special school.

Nov 2009: Izzy had another big seizure lasting about 1 hour 20 mins but recovered very well and it was no were near as bad as the last one.

2010: Izzy is 7 yrs old and is making very good progress and loves her school, they have taught Izzy to swim! She has her Duck 1 badge. Also Izzy came out of nappy’s when she turned 7.We love her so much, she is such a character and brightens up each day.
She still has her wheelchair but also now has a walking belt, she can only walk short distances but she continues to improve.
This year is going to be another hard year as Izzy is going to have another embolization but not in Paris, in GOSH so we will have to put our trust in someone else which is very scary. Reading back on all that Izzy has been through i know she is a fighter and she is in good health so i just pray that it will all go well.

If you are reading this and are going through the same thing i just want to say don’t give up hope. I don’t know how long i will be blessed with Izzy or if she will ever walk but there is always hope.

Alison xxxxx Cheshunt, Herts, UK

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About vogadmin

Vein of Galen UK is a website dedicated to families and sufferers of Vein of Galen malformation all over the world. We provide information and support for families affected by this condition.
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3 Responses to Isabella Carmen Edwards

  1. natalie says:

    hope ur daughter is ok my thoughts are with her, vein of galen is so complicated its that rare with very little doctors even being aware of the condition and there are so many different ways VOG can go. by this i mean. some as ur daughter has fits and my son has never had one. and then theres different types of complication and after affects. and ive read about at least 2 stories where the VOG hasnt been treated or has gone un-noticed. my son was born 10/10/10 with vein of galen and i met a great team up in glasgow who i think also works closly with paris. profesor joe bhattarchrya he has saved my sons life 5 times. my son is coming up 2 this october 2012 on my sons last embolization they used a new way of treating hard to get veins. instead of going in threw the artery they went in threw the juglur. i would recomend any one with VOG to be treated by professor joe bhattarchrya or as i would call him doctor joe x

    • Melisa says:

      I am 31 week pregnant and my baby boy is diagnosed with vogm. Reading Izzys story gave me hope so thank you for posting that. I hope she is doing well.
      I dont know much about this rare disease and I am terrified of what might happen. From what I read there are only a few specialist drs in the world who knows about this and still operates. If my baby borns, he will need embolisation done and we are referred to Gosh. Do you recommend elsewhere? Pls help..thank you.

      • natalie says:

        Hi im kyle hoppers mam my son has had 6 embolisations and is doing great he was treated by professor dr joe bhattacharya at yorkhill hospital for sick children in glassgow he only the other specialist in england but is absolutely great I strongly recommend him and his team x

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