Thursday, April 29, 2010
The tricuspid atresia is a heart malformation where the tricuspid valve is dysfunctional or in Maria’s case was totally missing and it was replaced by a membrane.
When Maria was only two months old, the doctors from Targu Mures told us that there isn’t any solution for her, except double cardio pulmonary transplant.
We got stronger and we searched for solutions abroad. They are called palliative surgeries and, in Romania, they aren’t entirely performed yet. Back then, the same as we do now, we took things step by step and we said “we’ll see what is going to happen next”. You were beside us, many people from “despre copii” (“about children”) and from other places too. We strongly believed every word of the foreign surgeons.
I gathered in time all information referring to Maria’s heart disease, as most of the time we were isolated in some hospital or at home.
We even have a document signed by a foreign doctor where we were told that after completion of the surgeries she has 90% chances to a normal life, which encouraged us a lot.
After the last heart surgery, the third stage of the Fontan procedure, they prescribed us Coumadin. Then it was the first time when I read about the long-term effects of Coumadin, I understood that new complications are to come, thrombosis or maybe haemorrhages, or liver diseases. Coumadin, like other medicines, is good for something and not so good for other organs.
We understood that we were not going to have a normal life and we decided to settle abroad, in Germany, near the hospital.
Since with the plastic bronchitis, I found out there are things much worse than long-term side effects of Coumadin. I read again updated information about tricuspid atresia, I read about how they try extending life for the cardiac people in Western countries, with palliative surgeries. I know there are another 8 or 9 mothers who have children affected by this disease, some of them are on the waiting list, sometimes for a double transplant, as we were suggested in Romania about five years ago and others are assisted with “compassion”, an expression invented by western medicine for the parents who stopped fighting the disease.
Now when I got here I wonder which is preferable: the hardness of a Romanian doctor who tells the mother “go home and have another child, cause this one is going to die” or the “compassionate assistance”??? This “go home” is also one of the reasons why many babies born with malformations are abandoned in maternity. But the “compassionate assistance” is much, much harder to bare!
My greatest wish is to find an adult person with corrected tricuspid atresia who “lives almost normal” today or who simply “lives”.
I live with the guilt that I didn’t know then all I know now and with the guilt that I have always promised to some people dear to Maria that she would live a normal life.
But I know for sure that we would have never given up. These five years with Bella are the most beautiful years in our lives and we are very very happy! Even if our heart is crying.
As a treatment to plastic bronchitis, the German doctors try everything it was tried before, by very few others. Maria was ten days in the intensive care unit and three days in a normal hospital room, but because the oxygen saturation dropped again the following day, she was brought again in the intensive care unit. When we’ll have her home, she’ll have an inhalator and a medication schedule recommended by the doctors.
From the list of the very few who suffer from this disease, about seven and I’m talking only about cardiac children with tricuspid atresia, there are very few “alive” and most of them are “awaiting”. I really hope this “awaiting” means that they are on the transplant waiting list. The rest are “expired” in medical slang.
We are ready to go all the way and we only pray to God to give us strength to be able to endure. They hope the same. She can barely stand the oxygen mask already and the repeated inhalations. Yesterday she was lemon yellow and she was asking if I think we’ll be staying in hospital for long. And I was smiling while telling her: “yes, honey, it’s very nice here and we should stay a little longer, because the doctor loves us, and I sleep very well on the couch outside, and they have delicious meal, yummy… we have a room only for ourselves and all these nice ladies who bring us books and presents would like us to stay a little more.” And let’s better sing something, we lost the CD with Cleopatra Stratan and we are listening to Christmas carols now. She falls asleep. And as long as she still makes lists with what she wants us to bring her tomorrow, it’s a great day for us.
When Maria was only two months old, the doctors from Targu Mures told us that there isn’t any solution for her, except double cardio pulmonary transplant.
We got stronger and we searched for solutions abroad. They are called palliative surgeries and, in Romania, they aren’t entirely performed yet. Back then, the same as we do now, we took things step by step and we said “we’ll see what is going to happen next”. You were beside us, many people from “despre copii” (“about children”) and from other places too. We strongly believed every word of the foreign surgeons.
I gathered in time all information referring to Maria’s heart disease, as most of the time we were isolated in some hospital or at home.
We even have a document signed by a foreign doctor where we were told that after completion of the surgeries she has 90% chances to a normal life, which encouraged us a lot.
After the last heart surgery, the third stage of the Fontan procedure, they prescribed us Coumadin. Then it was the first time when I read about the long-term effects of Coumadin, I understood that new complications are to come, thrombosis or maybe haemorrhages, or liver diseases. Coumadin, like other medicines, is good for something and not so good for other organs.
We understood that we were not going to have a normal life and we decided to settle abroad, in Germany, near the hospital.
Since with the plastic bronchitis, I found out there are things much worse than long-term side effects of Coumadin. I read again updated information about tricuspid atresia, I read about how they try extending life for the cardiac people in Western countries, with palliative surgeries. I know there are another 8 or 9 mothers who have children affected by this disease, some of them are on the waiting list, sometimes for a double transplant, as we were suggested in Romania about five years ago and others are assisted with “compassion”, an expression invented by western medicine for the parents who stopped fighting the disease.
Now when I got here I wonder which is preferable: the hardness of a Romanian doctor who tells the mother “go home and have another child, cause this one is going to die” or the “compassionate assistance”??? This “go home” is also one of the reasons why many babies born with malformations are abandoned in maternity. But the “compassionate assistance” is much, much harder to bare!
My greatest wish is to find an adult person with corrected tricuspid atresia who “lives almost normal” today or who simply “lives”.
I live with the guilt that I didn’t know then all I know now and with the guilt that I have always promised to some people dear to Maria that she would live a normal life.
But I know for sure that we would have never given up. These five years with Bella are the most beautiful years in our lives and we are very very happy! Even if our heart is crying.
As a treatment to plastic bronchitis, the German doctors try everything it was tried before, by very few others. Maria was ten days in the intensive care unit and three days in a normal hospital room, but because the oxygen saturation dropped again the following day, she was brought again in the intensive care unit. When we’ll have her home, she’ll have an inhalator and a medication schedule recommended by the doctors.
From the list of the very few who suffer from this disease, about seven and I’m talking only about cardiac children with tricuspid atresia, there are very few “alive” and most of them are “awaiting”. I really hope this “awaiting” means that they are on the transplant waiting list. The rest are “expired” in medical slang.
We are ready to go all the way and we only pray to God to give us strength to be able to endure. They hope the same. She can barely stand the oxygen mask already and the repeated inhalations. Yesterday she was lemon yellow and she was asking if I think we’ll be staying in hospital for long. And I was smiling while telling her: “yes, honey, it’s very nice here and we should stay a little longer, because the doctor loves us, and I sleep very well on the couch outside, and they have delicious meal, yummy… we have a room only for ourselves and all these nice ladies who bring us books and presents would like us to stay a little more.” And let’s better sing something, we lost the CD with Cleopatra Stratan and we are listening to Christmas carols now. She falls asleep. And as long as she still makes lists with what she wants us to bring her tomorrow, it’s a great day for us.
Labels: Mommy
Subscribe to:
Post Comments (Atom)
0 comments:
Post a Comment