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Re: MY BEAUTIFUL BABY GEORGIA WITH SMA TYPE 1. I NEED SOME ADVISE PLEASE. . . . . . |
Hi
Our daughter was born on the 1st January 2008 and we lost her yesterday(10/08/0). She had SMA but the gene could not be found and it was picked up through a EMG test. In the end she only could move her hands and yesterday when I tried to wake her up before we turned her ventilator of she was struggling. I spent the whole night with her as the nurses had put us into a private room and put her onto a bed for me to sleep by her. It was the best and the worse night of my life but she looked so peaefully and I was relieved she was no longer struggling. Please stay strong. |
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Re: Re: MY BEAUTIFUL BABY GEORGIA WITH SMA TYPE 1. I NEED SOME ADVISE PLEASE. . . . . . |
| I was so so sorry to read your e-mail becky. Tears were rolling down my face. There are no words - only to tell you i'm thinking of you and you sound very very brave. SMA is horrendous. All the very best. Lucy x |
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My prescious baby Georgia has died |
Hi Becky
How are you? I thought i'd e-mail you. Our beautiful Georgia died of type 1 on 22nd Aug, only 7 months 19 days old. I too, am so relieved she is no longer struggling. She was so so weak at her end. I miss her so much i ache with sadness. I can only hope now she is at peace. |
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Re: MY BEAUTIFUL BABY GEORGIA WITH SMA TYPE 1. I NEED SOME ADVISE PLEASE. . . . . . |
| hi lucy. This is the first time i have done this. my little boy was born 9th april 2006 and was diagnosed with sma type 1 on the 4th april 2007. he is nearly 2 1/2years old. I have a daughter who's 4 and a real handfull. last april i felt the same as you when we were told the news. I've cried everyday since that day last year when on my own but when with my children and partner i put on a brave face and get on with life. we take each day as it comes and know that we have been blessed with our little angel. we know time is precious and make the most of everyday as we were told it was unlikely kyle would live past his 2nd birthday. I hope little Georgia, yourself and your family stay strong. i was exactly like you last year and one year on he's still here and fighting. god bless x |
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Re: Re: MY BEAUTIFUL BABY GEORGIA WITH SMA TYPE 1. I NEED SOME ADVISE PLEASE. . . . . . |
| Oh my goodness. Can you tell me your story about little Kyle. That was a late diagnosis i fear. Georgia was diagnosed at 4 1/2 months. Is your son on medication or physio or nebs ,O2?? Am very interested to hear your story. Lucy |
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Re: Re: Re: MY BEAUTIFUL BABY GEORGIA WITH SMA TYPE 1. I NEED SOME ADVISE PLEASE. . . . . . |
| hi lucy. sorry about the late reply. I hope your all ok. kyle was born 9th april 2006, he weighed 9lb 2oz and was a solid little boy. his feeding was fine and i'd no cause for concern until he reached about four or five months and his lack of ability to do things. With having a daughter at four i was comparing his development with hers. I was worried when he didn't pull his head up when lead on his front or there was no signs of him starting to crawl. I told my mum and partner about my concerns and everyone told me he's a boy, their lazy and it will happen. At 8 month the health vistor did his development check and i told her my concerns and she referred us to the hospital. I could tell by the drs face she knew what it was but they did the blood test and said we'll wait for the results. On the day we were going to get the results we were saying to each other nothing will be wrong it will all be fine only to be told the worst news we will ever be told. we got the news just before his 1st birthday. we prayed that he'd make it for christmas and we got that then it was for his 2nd birthday and we had that in april. kyle is doing really well at the moment. since october he's had 3 spells in hospital with chest infections but recovered fine with antibiotics. he has physio every 4 weeks but we do it at home daily. he's on no medication or nebs. he doesn't need oxygen at night time yet. he's just had his tonsils removed and as really improved with his breathing and eating. he eats whatever the family are having and doesn't need any tubes for feeding. He attends a special nursery one day a week and he loves it. You have to be strong there is hope. we were told kyle wouldn't reach his 2nd birthday and he's still with us doing so well. Keep strong and if you want to ask me anything i'm here if you want to talk. god bless. love paula x |
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Re: MY BEAUTIFUL BABY GEORGIA WITH SMA TYPE 1. I NEED SOME ADVISE PLEASE. . . . . . |
Hi Lucy, SMA is an awful diagnosis in the fact as a parent you feel so entirely helpless. we have just lost our 2nd son to type 1 just 2 weeks before his 1st birthday. Not alot makes the anxiety any easier, there is a constant fear that something at some point will happen, the constant hope that something will come along to help them.
I went to bed every night wondering if this will be the night, woke up every morning wondering if he was going to have a good day or bad day, popped out to the shops wondering if i would come back to find an ambulance at the door or a call to say he's had to go to hospital.
There is no easy way to deal with all that emotion and worry, it is only natural but somehow as a parent you do cope with it.
I put my heart and and soul into caring for Toby so that i knew, when the day came that he died, i had done everything i could for him.
Good luck with Georgia.
Kathryn X |
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Re: Re: MY BEAUTIFUL BABY GEORGIA WITH SMA TYPE 1. I NEED SOME ADVISE PLEASE. . . . . . |
Hi Kathryn,
I was very sorry to read of your baby Toby death. We have just lost our baby Georgia on 22nd Aug. She was 7 months and 19 days old.
What a total hellish condition. I too was feeling just as you described with the worry and complete helplessness. I remember typing that first email thinking there must be something i can do for her. I must be missing something. I know now all i had to do was love her, and i did that with every ounce of me. Georgia was totally amazing and i shall never forget her smile or twinkling eyes - it said a thousand words. I miss her so much i ache but i am also relieved my Georgie-Ann isn't struggling to breathe anymore. She got so weak and was having break through doses of morphine at the end. As my prescious baby lay dying in my arms i promised her i'd fight for awareness of this crippling condition. I find it so hard to beleive it is so unknown. I , just like you through myself into all of Georgia's care and left nothing unanswered and no stone unturned. I do take comfort from that like it sounds you do. We have maggie as our family support worker who is brilliant, do you have maggie too? |
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Re: Re: Re: MY BEAUTIFUL BABY GEORGIA WITH SMA TYPE 1. I NEED SOME ADVISE PLEASE. . . . . . |
hi lucy, i'm so sorry to hear about Georgia, the day she died was the day of Toby's funeral. they all have twinkly eyes and such great expressions, their smiles and eyes do indeed say a thousand words if not more. babies with SMA touch the lives of eveyone they meet and they are just so inspirational and amazing and i don't know about you but i feel that you can only be proud to have given the chance to care and love someone so beautiful in every way.
yes maggie is my family support worker and she is lovely.
how are you and the rest of the family coping? you say you have a 3 1/2 yr old, matthew my youngest surviving son was that age when Jake our first son with the condition died.
if you need to chat i will be around for the next few weeks most of the time.
my sincere condolances to all of you.
kathryn X |
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Toby and Georgia |
simon (my husband) and i have a great family around who we are living with at the moment. My only other daughter Olivia is 4 in november and she is my saving grace.
I'm confused, have you had 2 children who have died?? sorry for confusion |
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| Fri Sep 12, 2008 10:14 pm |
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Re: Toby and Georgia |
yes i have lost 2, Jake, my first son was born 20th march 2006 diagnosed 1st sept 2006 and died on the 7th Nov 2006 at 7 1/2 months old, a month later I fell pregnant with Toby who was diagnosed antenatally through a CVS in Feb 2007, was born on the 30th Aug 2007 and died on the 16th August 2008 just 2 weeks before his first birthday.
you need friends and family at a time like this, i would be lost without mine, fortunately my hubby is really supportive too. |
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| Fri Sep 12, 2008 10:22 pm |
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Re: Re: Toby and Georgia |
| What made you go through with your second pregnancy? I hope that is an appropriate question. |
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| Fri Sep 12, 2008 10:38 pm |
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Re: Re: Re: Toby and Georgia |
not at all, i thought about it very hard and it had to be one of the most difficult decisions i had to make, ever but i had to weigh up the pros and cons. in my head i had two boxes so to speak, in the box for termination i had:
1: baby dies 2: my choice 3: blame, guilt and what if? scenario 4: what would he have looked like, smelt like, sounded like etc.
in the box which was headed keep baby i had
1: baby dies (same outcome) 2: time will decide, not me 3: will never have guilt, blame or what if? scenario 4: would know what he looked like, smelled like sounded like etc. 5: would have given him the chance to experience life, happiness and most of all love. 6: wouldn't have changed the fact i'd ever had Jake so why do it with Toby.
basically both ways were going to hurt like crazy, no choice in that but the decision we made was the one that we as a family would find easiest to live with in the long term.
of course i would never ever critisise anyone for opting the other way, it's one of the hardest things you have to do if you find your self there and i came under an awful lot of critisism for keeping him.
i'm glad you asked. |
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| Fri Sep 12, 2008 10:55 pm |
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Re: Re: Re: Re: Toby and Georgia |
| oh my god. you sound so brave. I dont judge you. you sound like you gave your boys everything they needed. I suppose its hard to say what i would do if in that situation. How is Matthew? I'm pleased i didnt upset you by asking that question. |
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| Sat Sep 13, 2008 10:50 am |
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Re: Re: Re: Re: Re: Toby and Georgia |
matthew is fine thank you, all together I have had 5 children, i have Josh 10yrs, Anna 6yrs, Matthew now 5yrs and Toby and Jake.
As for brave i'm not too sure about that.
I try to be open and honest with the kids, it's easier, if they have any questions i try to answer them if they need a cuddle i'm there to give it to them, we don't avoid the subject of Jake or Toby and fortunately this time round we have the Rainbow Trust and Julia's house hospice involved with the kids which has helped us and them incredibly.
if it's not too personal, before georgia's diagnosis did you think you would have any more kids? I have decided to stop now, i have 3 healthy children and as i have only just turned 30 i have a future to focus on, career wise that is. |
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| Sat Sep 13, 2008 11:34 am |
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Re: Re: Re: Re: Re: Re: Toby and Georgia |
| You are without a doubt brave. I have olivia nearly 4 and georgia just died. Before i had georgia i wanted more and that hasn't changed. I'd love a big family but if we only have olivia then im grateful i have her. She is a real mini me! I'm nearly 28 and i feel nearly 100 at the moment so i think we'll wait for next one a while. It seems to me from what ive read from peoples personal stories they go on to have another baby very quickly after they lost a child. You've had alot to deal with for your years. We went to Rainbows childrens hospice and they were fantastic too. We live in the midlands so are very lucky with the jennifer trust not being too far away. Do you mind if i ask what sort of ending you chose for your boys and where they are now? We bury Georgia's ashes on tues in the baby section of a cemetry. I am totally dreading it. Keep being ill |
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Re: Re: Re: Re: Re: Re: Re: Toby and Georgia |
we buried Jake and we had for hima white horse and cart, a baby blue coffin his name spelled in roses and everyone who attended the funeral had to wear white and baby blue, Toby was buried next to Jake and we had bright and colourful order of services with glittery stars that the kids made and loads of helium balloons that we asked every one to take one and let it go as they left the church. his name was spelled out in red, yellow, orange and blue and the story he had was the hungry catapillar after all he was a big boy at 28lb.
we had a song called 'borrowed angels' by kristin chenoweth and my dad did a DVD slide show for him. if you can bring yourself to watch it here is a link
http://www.youtube.com/watch?v=YQjCRWDEiXY.
I wanted to try for another after Jake as i'd always wanted 4 children but i had wanted to wait a while, i fell pregnant with Toby straight away almost it was a month after his burial i found out i was pregnant a bit of a shock and hugely unexpected. i dont do pregnancy too well and the kids have been through alot, it's only fair that i put them first now.
I live in the south, there seem to have been a fair few of babies with SMA this year, someone mentioned that 3 of them have turned 1 this year.
i wish you all the best for tuesday, it's a hard thing to have to do and i ill be thinking of you.
have you read the poem a child loaned in inspirations? i think it is a lovely poem. |
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Re: Re: Re: Re: Re: Re: Re: Re: Toby and Georgia |
Hi Lucy,
I just also wanted to add my best wishes to you for next wk with your daughter.the stress of making the right descision both in life for our little ones with sma and also for funeral arrangements is so hard. we have just had our sons funeral last wk and it was so harrowing trying to decide what feels right in such devastating circumstances. i wish you well and hope for the future. And totally agree that Kathryn is so couragous by doing what felt right for her and her little one. Toby and Jake's video clips were beautiful tributes to them both. |
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: Jacob |
| your son died recently too? Im so sorry. All this that we have found ourselves in is horrendous. I keep thinking i hope i have done the right thing with Georgias body. Who knows?? I only ever tried to do the right thing for Georgia. Do you feel an over whelming feeling to fight for awareness of this condition?? I feel so angry that not even GP's seem to know about it. Are you coping? Nice to hear from you x |
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Re: : Jacob |
Yes, my little one passed away on the 2nd Sept. He was 15 months old. i think if it feels right, then gaining more publicity for sma on behalf of your daughter is a great focus for you and to keep talking about your knowledge from our hands on approach is really the best way for medical people to understand more and improve services for other sma families. Also some one said to me, how ever painful, to keep talking about your child is to keep the memories alive.
when you asked am i coping? i think not really, my heart feels like its been trampled on and then put back in, but i am trying so hard to do normal things even though, we quite clearly are not in normal circustances. so its quite an isolating time right now. Best wishes to you, Kathryn and other sma families reading. take care x |
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Re: Toby and Georgia |
| I have had to have some time our after looking at that tribute your dad did. It was amazing and beautiful. It is such a sma trait with those big sparkly eyes and that virtually hypnotic smile they all have. Amoung other things we had at Georgias funeral we had james blunt playing carry you home. I used to listen to it when it took me hour and half to get 7 oz down her. It almost seems now, that it was written just for my Georgie. I miss her so so much and nothing is taking this ache and pain away. |
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Re: Re: Toby and Georgia |
I was absolutely shocked as to how few people knew about the condition, i remember standing with my jaw dropped when i told a doc and they asked me what it was, with Toby i expected that reaction and yes i have had and would love to make people aware of the condition hence we have had 3 local echo paper articles about it, they started with a story about Jake and the most recent was about Toby.
I can't believe there are so many losses just recently, nicky how old was your son?
as for funerals, you do what you do because it is the right thing for you, it's not something that you should dwell on, both Jake and Toby's funerals were both completely different and i did what i felt right for both of them, both completely different boys. Lucy that song is lovely, it seems rather apt.
i know it seems like nothing can take that pain away but it does ease, it really does. you'll never forget them, they will always be with you and as time goes on pain fades, the sad painful memories become happy memories.
give the ache and pain time, how you feel is perfectly normal, don't try to take it away you've lost your baby why wouldn't it hurt, you loved her.
try writing down your feeling and memories and make a diary then you will have refrence to things you thought you might forget X |
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Re: Re: Re: Re: Re: Re: Re: Toby and Georgia |
| wishing you all the best for today, i am thinking of you. kathryn X |
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Re: Re: Re: Re: Re: Re: Re: Re: Toby and Georgia |
Such strength in you all...just hoping i can be as strong when our time comes. I hate the fact that my son might suffer at the end. It sends a chill down my spine.
Stupid i know, but how there eyes sparkle and dance when the only thing in mine are tears. |
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Re: MY BEAUTIFUL BABY GEORGIA WITH SMA TYPE 1. I NEED SOME ADVISE PLEASE. . . . . . |
Hi, i am Kathryns husband, i have read converstion and i am so sorry to read about your loss, i agree that the condition needs to made alot more aware of, as when you mention to someone about SMA alot of people think your on about the milk, that how nieve people are, but it's not there fault as it it nowhere near as publicied as what it should be, i mean it is the no1 killer of babies under the age of 2.
I know with Jake i was burying my head in the sand, thinking this isn't happening but at the same time trying to keep everything as normal as possible with the other children, and Kathryn. which was very hard considering Jake spent 6 weeks in hospital the day after his diognosis. and it was the start of a new school year, with Josh going into middle school.
Everybody kept asking me how i was doing and all i could reply is "i have to be strong for Kathryn and the kids" which i was, outwardly.
With Toby, it different,we found out his diognosis while our emotions were still very raw after loosing Jake, and it was still 6 months before he was born, so we found ourselves still mourning for Jake and now mourning for a baby we hadn't even met yet, but he had a name, and obviously we knew he was a boy, again.
This time round, i couldn't be as strong, i couldn't hide my emotions, i found myself welling up over the smallest thing, and being a bloke, i was embarresed with myself. we were fighting alot more, which we rarely did before, my friends have said that they don't know how they would cope and how they would manage to stay together with there partner, we seem so strong. which we i'd like to think we are.
I remember thinking that this situation would either break us or bring us closer together, i'd like to think that it has done the latter.
I don't know about you, but i have noticed that both our son's had the abiltlity to inadvertantly bring our families together, and find out that we had alot more friends than we ever thought we had, so many people rallied around for us, helping with Josh, Anna & Matthew. It somehow made things that little bit easier, knowing that there are some really really fantastic people out there that have dropped everything to help our family.
I don't think Kathryn told you but 2 days before Jake died, (5th Nov) we held an early christmas for him as we didn't know whether he would make, we had Decorations,(we bought a white tree with blue lights especially) presents, dinner, and of course fireworks, as it bonfire night. from now on we are putting his tree up on the 5th of Nov to mark his memory and because he died on the 7th, it marks his anniversary.
so from now on the old phrase "remeber, remember the 5ht of November" has a double meaqning for our family.
This year we have some glittery stars that Julia's House carers and children have made for us to put on our tree for Toby, as my wife has said, they have been brilliant.
My thoughts are with you and your family as we approach christmas,i know full well what you and your Husband are going through, as i remember thinking for the first time whilst looking around when driving, how can people walk around without a care in the world, stupidly thinking "don't they know we've just lost our son" of course they don't, but it doesn't stop you having selfesh thoughts.
Sorry for rambling on but one last thing, having lost a child through SMA or any illness, makes you cherish everything you have, and and makes you the least selfish people going, as you have given everything to your child, with no thought for yourself, how can that be selfish. Take Care |
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