Treatment in Kosovo

Question

Hello,

My sister in law and her husband have a 3 year-old, healthy daughter. In August 2007 she gave birth to a son who was suffering from CF and died in December 2007. They like to have more children, now my question: Is there a possibility of prenatal diagnostics? Can this be done in Kosovo? Are there medical European networks that could also help persons concerned in Kosovo? Apparently, there are such possibilities in Skopje (Macedonia), but they are supposed to be very expensive.

I am looking very forward to hearing from you soon since the couple suffers very much from this situation and has not received clear answers to their questions. Thank you very much for your effort.

Best regards,

Answer

Dear questioner,

I am sorry that your family had to suffer such a severe blow of fate and I can understand very well that your sister in law is afraid that she could have another child with CF.

Since both parents carry the CF mutation, for recessively inherited diseases there is a 25 % probability to have a child with CF again. There is the possibility to undergo prenatal diagnostics, i.e. to look by amniocentesis – in most cases as of the 14th week of pregnancy – if the unborn child is suffering from CF. If so, it has to be decided, however, if the child is supposed to be born or not.

Another possibility is the preimplantation genetic diagnosis where an in vitro fertilization is done. Usually on the third day after the insemination, a cell of the embryo (which consists at that timepoint of 4-8 cells) is analyzed for CF. Only such embryos are transferred in the uterus of the mother, that are not suffering from CF.
However, this is legally forbidden in some European countries, for example in Germany. This possibility exists, e.g. in Belgium so that parents from our outpatient clinic go there to have this method done. However, this has to be paid by the patients themselves since the health insurance does not cover this measure.
The genetic analysis of the cells from the amniocentesis as well as of the cells from the embryo require the knowledge of the mutations of the parents.

I am sorry but I cannot give you information about the situation in Kosovo. As far as I know there is no CF ambulance and no CF self-help group. Furthermore, I do not know any European networks that could deal with the problem.

You could contact the German CF association ( www.muko.info ); maybe they know a possibility to help you in your particular situation.

All the best and good luck for your family,
Silke van Koningsbruggen

24.04.2008