Charlie Boo - Making memories
Donation protected
MY NAME IS CHARLIE SPEED, THEY CALL ME CHARLIE BOO, THIS IS MY STORY -
At 19 weeks and 5 days pregnant, we went for our ultrasound scan, they took one look at the baby on the screen and said "this baby is sick", I just remember feeling sick to the stomach and saying I knew it, I knew something wasn't right, he was so inactive and I hadn't had any pregnancy symptoms at all, they sent us to bristol where the fetal medicine unit took us on and did in-depth scans of the heart and the whole baby in general, we were told that the baby was very very poorly with fluid all over his body, it was squashing his lungs, his heart was pushed to the right side of his chest and barely beating, he had 3 holes in his heart ventricles and his body was 80% filled with fluid, we were told we would lose him within 5 days, we opted to have the fluid around his lungs removed to give him a fighting chance and they took some fluid for genetic testing, then was told to go home and grieve. Anyway 10 days passed and he was still with us, he was now more active and still growing, so they re-scanned me and this time the news was worse, they gave him a 0.1% chance of survival and said the fluid had doubled, we didn't know what to do with ourselves, there was nothing more they could do so they offered us a termination but we refused. We wanted mother nature to chose for us. Again we were sent home, then we went to see a genetics doctor who told us our baby had severe brain damage and a huge deletion & duplication of chromosome long arm 13, more then 82 missing genes and 82 duplicated genes on the other side, she said it was a freak of nature and the chances of it happening again were minimal, but we said we wanted this baby, so we continued the pregnancy, every week being told at each scan that he was getting worse, still offering us a termination, I was a complete mess, trying to look after my 5 children and myself was impossible, my husband was a total mess too, our children were falling to pieces right in front of our eyes and there was nothing we could do to put it right, moving on a little as it was the same thing every week until 36 weeks, I went for a scan and while I was laying on the bed, the lady looked at me and said.....its a miracle, I can't believe it, his fluid all over his body had disappeared, all that remained was fluid around his lungs, now that didn't really change anything because it was the lung fluid that was going to kill him as he wouldn't be able to breath and his lungs were so under-developed, they couldn't help him in any way, so I was told to still expect him to be still born, again we were offered a termination, we were holding on to false hope, I didn't accept that this was the case, i used to cry myself to sleep every night, we were praying for a miracle, I needed to do that to get through each day.
We had to go to so many appointments to plan for his delivery, what would they do with him if he did breath, what did we want them to do etc. My due date came and went, I was induced at 42 weeks and he was born 8 hours later, it was a straight forward natural birth, he was born not breathing & after 1 minute of oxygen, he cried, it was a miracle, the docs were baffled, how was he breathing, how could this be! They left us to rest cuddled up in bed for the night. The next day they did an examination and did some blood tests on him, still didn't know if it was a boy or girl as he was born with ambiguous genitalia, but have genetics to say he was a boy so I went with that. The blood tests came back and they hit us with a hammer, told us our baby was slowly being poisoned as he was producing too much co2 and his oxygen levels were far too low, they sent us to the children's hospice and gave him 24 hours to live, well guess what he didn't go anywhere, he just got better and better. Yes he has a lot of complications and he is deaf but he is alive, and he is reaching some milestones, I feel that they are wrong about him, yes he has fluid in his brain that shouldn't be there, he has heart problems but none of that stops him, he is an active baby with a big voice when needed, he has lots of specialists who care for him, ie physio and other therapies, He still has small lungs, with fluid around them too, but I know he will surprise them yet again as he has all the way through. Our prayers were answered
Update on Charlie @ 18 months old:
Charlie's medical problems are severe but he is now 21 months old and although he has spent alot of time in hospital with ecoli, pseudomonos, pneumonia, chest infections and sepsis amongst other things, he is still fighting strong, doing new things everyday, surprising medical staff daily, he loves to prove everyone wrong......Charlie cannot sit unaided, nor stand on his feet or straighten his legs, he has low tone muscle, he has no suck or swallow so has been ng tube fed up until he finally got a peg fitted on the 23rd of July 2018, he has severe brain damage, he is registered deaf blind although he has a tiny amount of blurred vision in one eye, he had several heart problems but they seem to have all healed up, leaving just one VSD and one ASD hole which they are monitoring.
He is epileptic, he has problems with his secretions which we are fighting to get control of as he is allergic to alot of the medications for this, he has a list of allergies which are rapidly building.
He is currently only on 5 medications, 3 months ago he was on 9.
8/10/18
Charlie boos condition has started to deteriorate, he is now oxygen dependant and requires upto 1 litre to allow his saturation levels to stay above 92, this is a sudden decline that happened this last week, prior to this, it was the odd spell here and there and it was corrected with good positioning, this is no longer the case, so it's left us feeling quite numb, we are told it is probably caused by his poorly wired and damaged brain, but no one really knows the answer, we have been referred to some specialists to do other tests, to make sure it's not obstructive, Charlie has alot of tests being run and to be run over the coming weeks, but for now we are about to enter a new phase in his life, one that is going to entail more memory making and special time, so we can enjoy him to the max before the angels take him away from us. The docs cannot predict how long we have so we are going to make every moment count, he is still the happy, smiling baby boy that you all know and love, we are not looking for people to feel sorry for us, we are looking for people to stay positive, believe in Charlie boo and pray for him, he deserves to be here, he deserves to be loved, he deserves this chance.
Please help us make these memories by donating, even 50p will help.
We love you Charlie boo, we believe in you.
OUR WORLD, OUR WARRIOR, OUR CHARLIE BOO xxxx
Thank you for taking the time to read this xxx
At 19 weeks and 5 days pregnant, we went for our ultrasound scan, they took one look at the baby on the screen and said "this baby is sick", I just remember feeling sick to the stomach and saying I knew it, I knew something wasn't right, he was so inactive and I hadn't had any pregnancy symptoms at all, they sent us to bristol where the fetal medicine unit took us on and did in-depth scans of the heart and the whole baby in general, we were told that the baby was very very poorly with fluid all over his body, it was squashing his lungs, his heart was pushed to the right side of his chest and barely beating, he had 3 holes in his heart ventricles and his body was 80% filled with fluid, we were told we would lose him within 5 days, we opted to have the fluid around his lungs removed to give him a fighting chance and they took some fluid for genetic testing, then was told to go home and grieve. Anyway 10 days passed and he was still with us, he was now more active and still growing, so they re-scanned me and this time the news was worse, they gave him a 0.1% chance of survival and said the fluid had doubled, we didn't know what to do with ourselves, there was nothing more they could do so they offered us a termination but we refused. We wanted mother nature to chose for us. Again we were sent home, then we went to see a genetics doctor who told us our baby had severe brain damage and a huge deletion & duplication of chromosome long arm 13, more then 82 missing genes and 82 duplicated genes on the other side, she said it was a freak of nature and the chances of it happening again were minimal, but we said we wanted this baby, so we continued the pregnancy, every week being told at each scan that he was getting worse, still offering us a termination, I was a complete mess, trying to look after my 5 children and myself was impossible, my husband was a total mess too, our children were falling to pieces right in front of our eyes and there was nothing we could do to put it right, moving on a little as it was the same thing every week until 36 weeks, I went for a scan and while I was laying on the bed, the lady looked at me and said.....its a miracle, I can't believe it, his fluid all over his body had disappeared, all that remained was fluid around his lungs, now that didn't really change anything because it was the lung fluid that was going to kill him as he wouldn't be able to breath and his lungs were so under-developed, they couldn't help him in any way, so I was told to still expect him to be still born, again we were offered a termination, we were holding on to false hope, I didn't accept that this was the case, i used to cry myself to sleep every night, we were praying for a miracle, I needed to do that to get through each day.
We had to go to so many appointments to plan for his delivery, what would they do with him if he did breath, what did we want them to do etc. My due date came and went, I was induced at 42 weeks and he was born 8 hours later, it was a straight forward natural birth, he was born not breathing & after 1 minute of oxygen, he cried, it was a miracle, the docs were baffled, how was he breathing, how could this be! They left us to rest cuddled up in bed for the night. The next day they did an examination and did some blood tests on him, still didn't know if it was a boy or girl as he was born with ambiguous genitalia, but have genetics to say he was a boy so I went with that. The blood tests came back and they hit us with a hammer, told us our baby was slowly being poisoned as he was producing too much co2 and his oxygen levels were far too low, they sent us to the children's hospice and gave him 24 hours to live, well guess what he didn't go anywhere, he just got better and better. Yes he has a lot of complications and he is deaf but he is alive, and he is reaching some milestones, I feel that they are wrong about him, yes he has fluid in his brain that shouldn't be there, he has heart problems but none of that stops him, he is an active baby with a big voice when needed, he has lots of specialists who care for him, ie physio and other therapies, He still has small lungs, with fluid around them too, but I know he will surprise them yet again as he has all the way through. Our prayers were answered
Update on Charlie @ 18 months old:
Charlie's medical problems are severe but he is now 21 months old and although he has spent alot of time in hospital with ecoli, pseudomonos, pneumonia, chest infections and sepsis amongst other things, he is still fighting strong, doing new things everyday, surprising medical staff daily, he loves to prove everyone wrong......Charlie cannot sit unaided, nor stand on his feet or straighten his legs, he has low tone muscle, he has no suck or swallow so has been ng tube fed up until he finally got a peg fitted on the 23rd of July 2018, he has severe brain damage, he is registered deaf blind although he has a tiny amount of blurred vision in one eye, he had several heart problems but they seem to have all healed up, leaving just one VSD and one ASD hole which they are monitoring.
He is epileptic, he has problems with his secretions which we are fighting to get control of as he is allergic to alot of the medications for this, he has a list of allergies which are rapidly building.
He is currently only on 5 medications, 3 months ago he was on 9.
8/10/18
Charlie boos condition has started to deteriorate, he is now oxygen dependant and requires upto 1 litre to allow his saturation levels to stay above 92, this is a sudden decline that happened this last week, prior to this, it was the odd spell here and there and it was corrected with good positioning, this is no longer the case, so it's left us feeling quite numb, we are told it is probably caused by his poorly wired and damaged brain, but no one really knows the answer, we have been referred to some specialists to do other tests, to make sure it's not obstructive, Charlie has alot of tests being run and to be run over the coming weeks, but for now we are about to enter a new phase in his life, one that is going to entail more memory making and special time, so we can enjoy him to the max before the angels take him away from us. The docs cannot predict how long we have so we are going to make every moment count, he is still the happy, smiling baby boy that you all know and love, we are not looking for people to feel sorry for us, we are looking for people to stay positive, believe in Charlie boo and pray for him, he deserves to be here, he deserves to be loved, he deserves this chance.
Please help us make these memories by donating, even 50p will help.
We love you Charlie boo, we believe in you.
OUR WORLD, OUR WARRIOR, OUR CHARLIE BOO xxxx
Thank you for taking the time to read this xxx
Organizer
Charmaine Marie Luter
Organizer
England
