Oxygen supply of the lung

Question

My 7-year-old daughter is under medical treatment in Spain since her 3rd month of life. She is suffering from CF and has now a lung volume of 35%. A transplantation is urgently necessary. For 10 month we have liquid oxygen for breathing via nasal tube at home. The physicians have NEVER offered this supply. Only on requesting it was possible without delay etc. It's my strong conviction that this "carelessness" of the physicians is the reason for the extremely bad health status of my daughter. If she had been able to breathe oxygen already for 3 years, her lung volume would be markedly better or am I doing wrong? Can somebody help me concerning legal measures on this? I want to prevent that this doctor will go on causing damage!!!!!!!!!!!!!!!!!!!!

Answer

Hello!
To be honest, the information that you have formulated in your short question does not suffice for being able to judge the situation of your daughter really well. In case the 35% lung function stand for the FEV1, at the same time you write that your daughter requires oxygen and one has already talked to you about transplantation, then this describes a situation, that is in our opinion very advanced for a 7-year-old child with CF. Admittedly I can understand your anger about the treating physicians in this case, the more important thing before a legal contest would however be for me the improvement of your daughter's situation. It is a fact, that with the acutal symptomatic therapy that is recommended in national and international guidelines, markedly better outcomes for CF patients can be achieved, so that we as pediatricians have to recommend lung transplantations at child age only very rarely. Furthermore, as things are today, a necessary oxygen therapy at that age is rather unusual and is mostly seen in CF patients, who did not get an adequate CF therapy. Therefore I would urgently recomment to you, to visit a certified CF center with your daughter. As you have formulated your question in German, the visit of your daughter at a CF center in Germany/Austria/Switzerland could bring you a bit further in your judgement, if and in how far indeed doctor's fault has led to the condition of your daughter or if your daughter has received the adequate therapy for CF patients that I mentioned.
For the legal standpoint only a lawer could help you, however I judge an adequate therapy of your daughter to be more important at first, which is for sure possible and necessary.
I wish you and your daughter all the best,
Olaf Sommerburg

24.02.2014