Denmark
On the 28th of December 2005 I gave birth to a lovely little daughter. 3160 g. and 51 cm.
Ahead of her birth we went to the hospital several times for blood test and scannings. Everything seemed to be normal.
Ahead of her birth we went to the hospital several times for blood test and scannings. Everything seemed to be normal.
After her birth the doctor told us that there was a small risk of Johanne having DS. They were instantly quite sure that the diagnose would be MDS. (of couse we didnt know anything about MDS....) (During my own childhood me and my family were foster family for 4 adult mentally handicaped - including one with DS.) We have had 25 years together with these wonderful people and therefore, of course, we were chocked when the diagnosis was clear for Johannes DS but still I never doubted that she would get a wonderful life.
Two days later a AVSD heart failure was confirmed and we started being afraid of our daughter's life. When Johanne was 3 month old she went through surgery and were hospitalized for almost 1½ month. She is now in very good condition but the doctors have already told us that she have to have yet another surgery. However - by the time being - it looks as though she can live without having a new operation.
She is now 7 ½ month old and are constantly impressing all the doctors. She is - due to her heart failure and operation - supposed to be delayed reaching normal milestones but she isn't. She is a little ahead of development - probably because of our stimulation (karlstadmodel, signs too speech, and motoric stimulation) Of course we wish for our daughter that she will be as good as possible - for her own sake - but no matter how she develops she will always be our beloved daughter - our little sunshine...
We are so lucky to have contact with 2 children and 1 adult with MDS. Fortunately they live nearby and have already visited us a couple of times. It means a lot to us to have contact with siblings - seeing how they develop and how their lives may appear. None of these have heart failure. It would be nice to get to know other mosaics with heart failure - we don't know if they will be a difference but it would surely be nice to meet them.
In Denmark there is not much material concerning MDS and no website, so it is with great pleasure that we got acquainted with your website.
Two days later a AVSD heart failure was confirmed and we started being afraid of our daughter's life. When Johanne was 3 month old she went through surgery and were hospitalized for almost 1½ month. She is now in very good condition but the doctors have already told us that she have to have yet another surgery. However - by the time being - it looks as though she can live without having a new operation.
She is now 7 ½ month old and are constantly impressing all the doctors. She is - due to her heart failure and operation - supposed to be delayed reaching normal milestones but she isn't. She is a little ahead of development - probably because of our stimulation (karlstadmodel, signs too speech, and motoric stimulation) Of course we wish for our daughter that she will be as good as possible - for her own sake - but no matter how she develops she will always be our beloved daughter - our little sunshine...
We are so lucky to have contact with 2 children and 1 adult with MDS. Fortunately they live nearby and have already visited us a couple of times. It means a lot to us to have contact with siblings - seeing how they develop and how their lives may appear. None of these have heart failure. It would be nice to get to know other mosaics with heart failure - we don't know if they will be a difference but it would surely be nice to meet them.
In Denmark there is not much material concerning MDS and no website, so it is with great pleasure that we got acquainted with your website.
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