Anna
Propionic Acidemia
8/21/1998 – 2/6/2004
8/21/1998 – 2/6/2004
BUTTERFLY
(Lenny Kravits)
(Lenny Kravits)
You are the most beautiful thing
I've ever seen
You shine just like sunlight rays
On a winter snow
I just had to tell you so
Your eyes sparkle as the stars
Like the moon they glow
Your smile could light the world on fire
Or did you know?
Your mind's full of everything
That I want to know
I just had to let you know
I just had to tell you so
You're my butterfly
Fly high
Fly fly fly
I've ever seen
You shine just like sunlight rays
On a winter snow
I just had to tell you so
Your eyes sparkle as the stars
Like the moon they glow
Your smile could light the world on fire
Or did you know?
Your mind's full of everything
That I want to know
I just had to let you know
I just had to tell you so
You're my butterfly
Fly high
Fly fly fly
On the 21st of August 1998, our beautiful girl was born. She was very small compared to her older sister. We were so happy and it felt so complete. Already after one day we noticed that Anna didn’t wake up by herself. An easy-going baby and we both knew so well how to handle now. Breastfeeding . . . no problem! We felt very confident but not for long.
Anna couldn’t maintain her own temperature well. We tried to keep her warm with aluminum foil between her blankets. Also drinking didn’t go quite right. She seemed to be too tired and not really fit??!! After 2 days we couldn’t cope with this situation any longer and we phoned the midwife in the evening. She assured us she would come the next morning, but 10 minutes later the door-bell rang. She happened to be around and wanted to have a look. Our heads bent over Anna’s cot... and there the tears came. No, this wasn’t good at all. Half an hour later we were in the hospital where we soon heard that Anna, our sweet little Anna, was a very sick baby. All our confidence was swept away and from this moment we stepped into a different world. The world of sick children...
The next day Anna was taken to another hospital, St. Radboud, a university hospital. That evening they told us the diagnosis: Propionic Acidemia. We had never heard of metabolic diseases as a lot of other people.
Anna’s first years were filled with hospital visits. In the beginning we went to St. Radboud hospital. Later, when our eldest daughter went to school, we chose a regional hospital closer to our home. Nobody said this was good or bad, but we wanted to live a family life as normal as possible. Anna’s medical treatment consisted of a glucose infusion and a schedule to build up her tube feeding. Building up her tube feeding meant decreasing the glucose. Not a lot more could be done for Anna.
For us and most of all for Anna this was a burden, because finding a vein was very difficult. Besides it happened quite often that she pulled out her infusion, so she had to be injected again. I don’t know how often I wanted to take my little girl with me, run away, go back home. No more white coats, no more pain . . . just HOME. But there was no choice . . . without the hospital, she wouldn’t have survived.
During the times that Anna was at home, we fully enjoyed her presence. The gap between Britt, her elder sister, and Anna became larger. It was slowly getting clear that Anna’s development was different. Her physical development was impeded owing to her flabby muscles. We didn’t know if she could ever walk, but when that happened at the age of 2.5 we found that was an extraordinary achievement! She had managed this all by herself, who would have ever thought that this would happen!
Summer 2002, Anna’s baby brother was born: Fabian. It was a miracle for us that we had a healthy son. Anna was very sweet for him and even though she couldn’t talk she clearly showed she was fond of him as of her older sister.
Meanwhile Anna was a regular visitor of the playgroup at rehabilitation centre De Tolbrug in Den Bosch. She really felt at home there. She enjoyed the company of the other children and the attention of her therapists. When Anna was 3 years old, she went to a school for physically handicapped children (Gabriëlschool) in Den Bosch. A special school bus picked her up and brought her home and she loved it. It became a fixed rhythm and that did her very good.
We found it therefore difficult to see that Anna every now and then got destabilized and had to go to the hospital again. Much as we did our best to keep her fit, her metabolism had often more to say. WHY did Anna have this little error in her genes? A question you will never get an answer to, a useless question.
Summer 2003 was Anna’s summer. Cadzand at the Belgian coast. Beach. Beautiful weather. Enjoy. You can read it off Anna’s face. We are so complete! Britt, Anna, Fabian.
The new school year starts. Anna is throwing up a lot. It is a sign that her metabolism is not working properly. When in December it looks like Anna is going to be destabilized we immediately went to Nijmegen. We wanted to be closer to the source. Anna’s diet is adjusted because she didn’t grow properly the last couple of months. We have good conversations with the dietician and the metabolic doctor. Just before Christmas we are home again. Not that this means the uncertainty is over, but we are not unfamiliar with suspense and uncertainty.
January 2004 Anna breaks her leg. It costs her a great deal of energy and strength because she finds it terrible! She can’t move an inch. Walking, something she loves so much because of her urge to move isn’t possible anymore. Halfway January Anna is pretty healthy despite her broken leg. It seems that her new diet is working well. That was heartening.
But then... on a Sunday morning, end of January. We are all having breakfast together. The tube feeding isn’t finished completely before Anna throws everything up. At the end of the day Anna is in the hospital again and we are not optimistic. After 1.5 weeks we decide that Anna has to be transferred to St. Radboud. She doesn’t seem to improve even though she often rides in her wheelchair to the playroom. But she often throws up: Anna is not fit.
On the day Anna is transferred to St. Radboud, as always I arrive in her room at 9 a.m. I discuss with the nurse . . . Anna’s breathing doesn’t sound as it should. I call my husband at his work and tell him that I’m feeling lonely. He decides to come this morning instead of waiting till the moment that she will be in the St. Radboud.
At 10 a.m. I call him again and two words are enough: come immediately! Anna’s metabolism has fallen down like a house of cards.
At noon Anna has died peacefully in my arms, she has left this world. It was enough. Anna couldn’t cope with it anymore. We think she made it very clear to us to slip away so quickly. It is the 6th of February 2004, Anna is 5.5 years old.
I don’t have to tell anyone what a great void Anna left behind. Her smile, her beautiful hair, her soft little hands. How can you let your child go? I don’t know, but it happens. But Anna is still with us. In another way. She will always be a part of our family. We are still with the 5 of us. Anna is our beautiful star, our flower, our princess. And she will never leave us.
Jacqueline
19-04-2005
Drunen
The Netherlands
Anna couldn’t maintain her own temperature well. We tried to keep her warm with aluminum foil between her blankets. Also drinking didn’t go quite right. She seemed to be too tired and not really fit??!! After 2 days we couldn’t cope with this situation any longer and we phoned the midwife in the evening. She assured us she would come the next morning, but 10 minutes later the door-bell rang. She happened to be around and wanted to have a look. Our heads bent over Anna’s cot... and there the tears came. No, this wasn’t good at all. Half an hour later we were in the hospital where we soon heard that Anna, our sweet little Anna, was a very sick baby. All our confidence was swept away and from this moment we stepped into a different world. The world of sick children...
The next day Anna was taken to another hospital, St. Radboud, a university hospital. That evening they told us the diagnosis: Propionic Acidemia. We had never heard of metabolic diseases as a lot of other people.
Anna’s first years were filled with hospital visits. In the beginning we went to St. Radboud hospital. Later, when our eldest daughter went to school, we chose a regional hospital closer to our home. Nobody said this was good or bad, but we wanted to live a family life as normal as possible. Anna’s medical treatment consisted of a glucose infusion and a schedule to build up her tube feeding. Building up her tube feeding meant decreasing the glucose. Not a lot more could be done for Anna.
For us and most of all for Anna this was a burden, because finding a vein was very difficult. Besides it happened quite often that she pulled out her infusion, so she had to be injected again. I don’t know how often I wanted to take my little girl with me, run away, go back home. No more white coats, no more pain . . . just HOME. But there was no choice . . . without the hospital, she wouldn’t have survived.
During the times that Anna was at home, we fully enjoyed her presence. The gap between Britt, her elder sister, and Anna became larger. It was slowly getting clear that Anna’s development was different. Her physical development was impeded owing to her flabby muscles. We didn’t know if she could ever walk, but when that happened at the age of 2.5 we found that was an extraordinary achievement! She had managed this all by herself, who would have ever thought that this would happen!
Summer 2002, Anna’s baby brother was born: Fabian. It was a miracle for us that we had a healthy son. Anna was very sweet for him and even though she couldn’t talk she clearly showed she was fond of him as of her older sister.
Meanwhile Anna was a regular visitor of the playgroup at rehabilitation centre De Tolbrug in Den Bosch. She really felt at home there. She enjoyed the company of the other children and the attention of her therapists. When Anna was 3 years old, she went to a school for physically handicapped children (Gabriëlschool) in Den Bosch. A special school bus picked her up and brought her home and she loved it. It became a fixed rhythm and that did her very good.
We found it therefore difficult to see that Anna every now and then got destabilized and had to go to the hospital again. Much as we did our best to keep her fit, her metabolism had often more to say. WHY did Anna have this little error in her genes? A question you will never get an answer to, a useless question.
Summer 2003 was Anna’s summer. Cadzand at the Belgian coast. Beach. Beautiful weather. Enjoy. You can read it off Anna’s face. We are so complete! Britt, Anna, Fabian.
The new school year starts. Anna is throwing up a lot. It is a sign that her metabolism is not working properly. When in December it looks like Anna is going to be destabilized we immediately went to Nijmegen. We wanted to be closer to the source. Anna’s diet is adjusted because she didn’t grow properly the last couple of months. We have good conversations with the dietician and the metabolic doctor. Just before Christmas we are home again. Not that this means the uncertainty is over, but we are not unfamiliar with suspense and uncertainty.
January 2004 Anna breaks her leg. It costs her a great deal of energy and strength because she finds it terrible! She can’t move an inch. Walking, something she loves so much because of her urge to move isn’t possible anymore. Halfway January Anna is pretty healthy despite her broken leg. It seems that her new diet is working well. That was heartening.
But then... on a Sunday morning, end of January. We are all having breakfast together. The tube feeding isn’t finished completely before Anna throws everything up. At the end of the day Anna is in the hospital again and we are not optimistic. After 1.5 weeks we decide that Anna has to be transferred to St. Radboud. She doesn’t seem to improve even though she often rides in her wheelchair to the playroom. But she often throws up: Anna is not fit.
On the day Anna is transferred to St. Radboud, as always I arrive in her room at 9 a.m. I discuss with the nurse . . . Anna’s breathing doesn’t sound as it should. I call my husband at his work and tell him that I’m feeling lonely. He decides to come this morning instead of waiting till the moment that she will be in the St. Radboud.
At 10 a.m. I call him again and two words are enough: come immediately! Anna’s metabolism has fallen down like a house of cards.
At noon Anna has died peacefully in my arms, she has left this world. It was enough. Anna couldn’t cope with it anymore. We think she made it very clear to us to slip away so quickly. It is the 6th of February 2004, Anna is 5.5 years old.
I don’t have to tell anyone what a great void Anna left behind. Her smile, her beautiful hair, her soft little hands. How can you let your child go? I don’t know, but it happens. But Anna is still with us. In another way. She will always be a part of our family. We are still with the 5 of us. Anna is our beautiful star, our flower, our princess. And she will never leave us.
Jacqueline
19-04-2005
Drunen
The Netherlands
