Healing baby Karl
Donation protected
KARL'S STORY
Sometimes a few moments can change one's life forever. We were looking forward to meeting our healthy baby after a happy, active pregnancy. Nothing could prepare us for what happened, those few minutes that turned our expectations upside down and determined his destiny. We have put so much effort into preparing for the perfect natural birth, with prenatal classes, healthy lifestyle, nutrition, exercise, relaxation techniques, you name it..we thought we had it all covered.
But no matter how much you plan things, sometimes the fate puts a bizarre spin on the events. During the baby's arrival something went wrong and he stopped breathing. He briefly recovered, but was finally rushed into an incubator in the intensive care where he started having seizures. That was not the start to his life that we imagined. Being separated right after birth was quite the opposite of my ideal birth plan!
From there it was a downward spiral of events where he almost didn't make it and we were just too shocked and overwhelmed to accept that this indeed was the reality and not a bad dream. It is a harsh awakening having to go from the joy of having your baby here with you to the despair of possibly losing him straight away. Those days in the intensive unit where the darkest moments of our life but the survival instinct kicked in and allowed us to somehow cope, while floating through this unreal situation, so we could be there for our baby. We would spend every waking hour at the hospital, talking and singing to him and touching him through the little windows in his incubator. I would express my milk so he could have it through his feeding tube.
And miracles happened. He slowly started recovering, getting his vital functions back one by one, opening his eyes, breathing unaided.. the wires and tubes slowly came off and with patience and insistance, he latched on and started feeding! It was such a joy and relief to finally having him close to us.
But the prognosis wasn't good. We were told that if he made it, it would be with serious consequences. We weren't ready for the details about his future limitations. We were just so happy he was here with us, the rest didn't matter, we would figure it out. For now he was just a cute little baby, similar to other babies.
For a while I worried about his lack of eye contact or smile, but it was still early days, I told myself. He would get there. At that time I couldn't even look at or pronounce the words describing his condition, it made me freak out. I was in a sort of happy denial.
As Karl grew, it became more and more evident, the difference between him and a normally developing baby. Everything that a baby acquires automatically and seemingly effortlessly, for him is a great struggle. It's like he's experiencing the world through a filter, and the communication with his environment is inconsistent and difficult.
During his first months of life we had to come into terms with his condition. We went through phases of denial, guilt, anger, sadness, until reaching some sort of acceptance. All those emotions are still there on a daily basis together with the heartbreak that things didn't turn out as expected, grieving for the loss of the healthy child of our dreams, but we learned to manage them in order to be the best parents we can be for our special baby.
I started an intense research into all possible remedies and therapies to make his life better. There isn't a cure for his condition, but there is lots of hope. Things can improve massively with the right therapy. We don't know how far Karl can get but we are determined to give him the happiest, most comfortable life possible.
As for now he hasn't learned to sit or crawl yet or to do any independent movement, he has hearing and vision limitation, he suffers from spasms and seizures on a daily basis, he has digestive problems and he's generally uncomfortable and in pain a lot of the time.
Caring for baby Karl is intense and exhausting as he doesn't like to lay down, he can't sit or entertain himself, he spends the time in our arms. The only pattern of movement he developed is stretching backwards so now is even harder carrying him around. Karl also dislikes having his nappy or clothes changed or taking a bath. He gets really scared and his muscles stiffen up, so all the daily routines that bring joy to typical parents, for us are basically a battle.
But despite all his difficulties, Karl is the sweetest, most sociable little boy, he loves people, he has a special charm and everyone is enchanted by him and in return he greatly enjoys the attention. Thanks to all the therapy he is having we saw some huge improvements in his posture and attention, and now he makes great eye contact and smiles a lot. Overall his social skills are promising considered the rough start he had in life, so we hope that his motor skill will eventually improve too. For now it seems like his body doesn't want to obey and it's sad to witness his struggles. Every child should be free to experience the joy through movement.
He is working hard at different therapies every week and we travel a lot to see the best therapists and medical specialists. There is much more that can be done and it's all limited by the costs. We are having a very hard time covering all his needs right now, and as he grows these will be increasing.
There is a promising new medical treatment with stem cells that is currently only available in America. I've been following other children like Karl who underwent the therapy, and their results are amazing. It gives me so much hope. The treatment is expensive, one infusion of stem cells is anything between 10 and 30k depending the number of stem cells, and if there's therapy involved.
I'm hoping to raise enough money to be able to do it soon, as the younger in age, the better the results!
Sometimes a few moments can change one's life forever. We were looking forward to meeting our healthy baby after a happy, active pregnancy. Nothing could prepare us for what happened, those few minutes that turned our expectations upside down and determined his destiny. We have put so much effort into preparing for the perfect natural birth, with prenatal classes, healthy lifestyle, nutrition, exercise, relaxation techniques, you name it..we thought we had it all covered.
But no matter how much you plan things, sometimes the fate puts a bizarre spin on the events. During the baby's arrival something went wrong and he stopped breathing. He briefly recovered, but was finally rushed into an incubator in the intensive care where he started having seizures. That was not the start to his life that we imagined. Being separated right after birth was quite the opposite of my ideal birth plan!
From there it was a downward spiral of events where he almost didn't make it and we were just too shocked and overwhelmed to accept that this indeed was the reality and not a bad dream. It is a harsh awakening having to go from the joy of having your baby here with you to the despair of possibly losing him straight away. Those days in the intensive unit where the darkest moments of our life but the survival instinct kicked in and allowed us to somehow cope, while floating through this unreal situation, so we could be there for our baby. We would spend every waking hour at the hospital, talking and singing to him and touching him through the little windows in his incubator. I would express my milk so he could have it through his feeding tube.
And miracles happened. He slowly started recovering, getting his vital functions back one by one, opening his eyes, breathing unaided.. the wires and tubes slowly came off and with patience and insistance, he latched on and started feeding! It was such a joy and relief to finally having him close to us.
But the prognosis wasn't good. We were told that if he made it, it would be with serious consequences. We weren't ready for the details about his future limitations. We were just so happy he was here with us, the rest didn't matter, we would figure it out. For now he was just a cute little baby, similar to other babies.
For a while I worried about his lack of eye contact or smile, but it was still early days, I told myself. He would get there. At that time I couldn't even look at or pronounce the words describing his condition, it made me freak out. I was in a sort of happy denial.
As Karl grew, it became more and more evident, the difference between him and a normally developing baby. Everything that a baby acquires automatically and seemingly effortlessly, for him is a great struggle. It's like he's experiencing the world through a filter, and the communication with his environment is inconsistent and difficult.
During his first months of life we had to come into terms with his condition. We went through phases of denial, guilt, anger, sadness, until reaching some sort of acceptance. All those emotions are still there on a daily basis together with the heartbreak that things didn't turn out as expected, grieving for the loss of the healthy child of our dreams, but we learned to manage them in order to be the best parents we can be for our special baby.
I started an intense research into all possible remedies and therapies to make his life better. There isn't a cure for his condition, but there is lots of hope. Things can improve massively with the right therapy. We don't know how far Karl can get but we are determined to give him the happiest, most comfortable life possible.
As for now he hasn't learned to sit or crawl yet or to do any independent movement, he has hearing and vision limitation, he suffers from spasms and seizures on a daily basis, he has digestive problems and he's generally uncomfortable and in pain a lot of the time.
Caring for baby Karl is intense and exhausting as he doesn't like to lay down, he can't sit or entertain himself, he spends the time in our arms. The only pattern of movement he developed is stretching backwards so now is even harder carrying him around. Karl also dislikes having his nappy or clothes changed or taking a bath. He gets really scared and his muscles stiffen up, so all the daily routines that bring joy to typical parents, for us are basically a battle.
But despite all his difficulties, Karl is the sweetest, most sociable little boy, he loves people, he has a special charm and everyone is enchanted by him and in return he greatly enjoys the attention. Thanks to all the therapy he is having we saw some huge improvements in his posture and attention, and now he makes great eye contact and smiles a lot. Overall his social skills are promising considered the rough start he had in life, so we hope that his motor skill will eventually improve too. For now it seems like his body doesn't want to obey and it's sad to witness his struggles. Every child should be free to experience the joy through movement.
He is working hard at different therapies every week and we travel a lot to see the best therapists and medical specialists. There is much more that can be done and it's all limited by the costs. We are having a very hard time covering all his needs right now, and as he grows these will be increasing.
There is a promising new medical treatment with stem cells that is currently only available in America. I've been following other children like Karl who underwent the therapy, and their results are amazing. It gives me so much hope. The treatment is expensive, one infusion of stem cells is anything between 10 and 30k depending the number of stem cells, and if there's therapy involved.
I'm hoping to raise enough money to be able to do it soon, as the younger in age, the better the results!
Organizer
Martina Piantina
Organizer
