CF and the wish to have a family

Question

Hello,
I am 29-years old and have CF and for 15 years also diabetes (however, I am in a realtive good health status: FEV1 is differing between 74% and 83% according to infections, allergy against polls). I am very sportive (running, Mountain-biking, sports in the mountains: climbing, walking, ski-tours....) At the moment I am in a little life crisis, as the wish to have a child is coming up nearly every day and on the contrary the fear about the future with CF and the fear about the great resposibility to have a child is coming also up. My partner and I talk about family planning (also he likes to have children), however he is also afraid, that my health status may worsening and I believe he has not enough courage. I had never thought, that once the wish to have own children could be so great in me. These permanent thoughts can one sometimes really tear apart and the treadmill of thoughts is turning around constantly. I am missing the contact to affected people. Also in the internet one can read only, that there are CF patients with children, however not, how their health status has been at the beginning of pregnancy, how they cope the daily life, which experiences they make in general. Furthermore I do not know, if I am already too old, in order to think about family planning at all, as a pregnancy has first of all to be successfull and in here years could go by. Furthermore I am afraid, that if the wish will not come true (due to a decision against a child or because it was not successfull), how one should cope with the emptyness, if people/friends around oneself are pushing a buggy happily. The situation at the moment is not very easy.

My question:
Where can I find reports from CF women, who gave birth to a child? Where can one come in contact?
AND: In which health status is family planning sensible at all?
I would be very pleased about an answer. Many thanks.

Answer

Dear questioner,
from your mail comes a great worry and insecurity, that arise from your wish to have children and your chronic illness. One has to emphazise however, that also healthy women, who are in the phase of life when family planning plays a role, are asking themselves the same questions. The thoughts are probably not turning aroung an illness, however in life there are many situations that can cause an insecurity. I want to say with this, that it is totally normal, to think about the possibilities to have children oneself, about the course of pregnancy and the time after, and about being mother as a whole and to have the wish to get informed about this.
The illness of CF is accompanied with an impaired fertility. In here, male CF patients are much more affected than CF females. In case of female CF patients it can be stated in general, that the better the general health status is, the higher is the probability to get a child and the better is the course of pregnancy. In case of patients with a good body weight and a better lung function, the pregnancy is in general earlier successfull and the course is more favourable. Special problems as diabetes, liver cirrhosis, germ colonization and others play in here also an important role.
Via the internet, your health status can hardly be judged, therefore you should seek for advice at an adult CF physician. During such a talk, one can be individually responsive to you taking into accout your results, the acutal therapy and the course of the illness. Pregnancies of CF patients are defined from the medical standpoint as high risk pregnancies. As today, however, CF often has a good course and therefore many CF patients are in a good health status at adult age, there are in the meantime many CF patients who were able to fulfill their dream of becoming mothers. If however, the health status is not sufficient or not stable, the planning of life should probably get another focus. In here, medical, however also psychosocial and emotional aspects have to be taken into acount. Counselling sessions are in any case very advisasble. In here, you could for sure get some contacts of CF mothers from your CF physician.
On the homepage of the German patient organisation Mukoviszidose e.V. you find a document of the AGECF (Working group of adults with CF) with contacts about the topic "family planning an wish to have children"
muko.info/leben-mit-cf/ag-erwachsene-mit-cf-agecf/ansprechpartner-und-themen.html [German site]
Further information sources [in German]:
- on the internet page of the Mukoviszidose organization of Berlin-Brandenburg e.V. you find a table with information about risk factors for a complicated course of pregnancy
www.muko-berlin-brandenburg.de/?mod=mukoviszidose&site=medizin_schwangerschaft
- a brochure about "pregnancy and CF" can for sure be provided by your CF center

I hope to have helped you a bit with my remakrs.
Best regards,
Yours Dr. Christina Smaczny

03.10.2015