I am Roosje Smid - I have Pulmonary Hypertension

The girl you see on the picture is the 7 year old Roosje Smid, she has a unique congenital heart lung defect which results in a life threatening high blood pressure especially in the lung arteries. This defect is known as Pulmonary Hypertension or PH (PPH). Today we know that Roos has Secondairy Pulmonary Hypertension. In Roos' case the defect is at least caused by the fact that the upper half of the arteries in the lungs that assimilate the oxygen from the air into the blood, have not been formed. Instead of these arteries extra (so called aberrant) arteries have been formed between the short and long blood circulation system, which is the cause for the high blood pressure in Roosjes lungs (around a factor of 4 above normal levels). Against this high pressure her heart has to work. It is beyond saying that eventually this little heart will lose this struggle.
 Roos
When this congenital defect was discovered at the age of 4 months, the lungs had already lost all their elasticity (compare this with an airballoon which had been filled with air for a long time) and the only hope was that her situation would remain stable - which it is up till today.

The only thing which can save her today is a heart lung transplant, which is - of course - a very dangerous operation. However, the longer she will be able to fight this battle the further the medical sciences will develop and the better her future will be.

In February 2002 the doctors suspected the socalled Scimitar syndrome to be the possible cause for the fact that Roos has developed pulmonary hypertension. Further investigations however showed that this was not the case and that no repair was possible. Miraculously the situation is still stable and both we her father, mother and sister and Roos enjoy life. Roos is a unique case.
 
This page is written by the parents of Roosje with the objective to show Roos to the world and bring her into contact with other persons suffering from PPH or you having an interest in PPH. Move your mouse pointer over the buttons on the left of this page to see what each section covers. Then, click the button to find out about the details.  Press the HOME button on the bottom left to return here.
 

If somebody has something interesting that he or she would like to share with others please send this information as soon as possible to me.Also if you want to find out about other persons around you who have PPH please send us an e-mail. We now know of a lot of children (and their family) all around the globe with Pulmonary Hypertension.