Not compatible with life

March 19, 2012 at 8:17 am 2 comments

How is it that in this day and age so many doctors are still so misinformed about ARPKD? It is so sad and frustrating to me. I received an email from a woman who recently lost a baby to ARPKD while she was pregnant and the doctors had said that the baby was incompatible with life. I often hear this and also that there is no hope for survival. “Incompatible” and “no hope” should not be used with ARPKD, ever!!!! I know I often worry that I am giving too much hope to some expectant parents but ARPKD is not a disease that is incompatible with life. What is incompatible is the 30% of babies who die at birth from ARPKD mostly due to their lungs not being developed enough because of the lack of amniotic fluid. And I honestly believe that some of that 30% is due to misinformed doctors. Doctors who tell the parents there is no hope for survival so no extreme measures are given or doctors who do not seek the information they need to help the baby, such as removing kidneys at birth if needed.

The parent who just emailed me assumed I had lost a baby to ARPKD and when I told her I had two sons living with the disease she said she hadn’t realized that was a possibility. And look how mild Max is! And even Gabe compared to other children with ARPKD. I get so angry when I hear this because I would love for that 30% to go down but with doctors who give no hope then it might never get better. And yes I do know some babies with ARPKD will not survive no matter what kind of care is given after birth. But I honestly feel that it doesn’t have to be 30%. And no I am not a doctor and do not have true facts for that but just from hearing so many stories about babies who were not even put on life support or parents who are told to take their babies off of life support or parents who are told to terminate pregnancies. I often think that if we had not put Gabe on a ventilator he would not have survived. I am not sure what we would have done if Gabe had a prenatal diagnosis of ARPKD and the doctors said it was not compatible with life and we should not put him on a ventilator and prolong his suffering. What decisions would we have made? But we are so lucky and grateful we did not have to make those decisions and that the best medical care was given to Gabe.

The problem is how to educate more doctors. How to get the word out that ARPKD is not incompatible with life and there is hope for survival with most babies with ARPKD. And that lung development is key to helping with survival.

My thoughts are often with these parents who have lost a baby to ARPKD. How can I support them and help them in the best way? I cannot even imagine the pain of losing a child. Plus the fear of having more children. Plus not having doctors who can help give hope for future babies with the disease. But the main thing I know is that I wish that no doctor were to say that ARPKD is incompatible with life ever again.

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Happy 6th birthday Gabe Big words

2 Comments Add your own

  • 1. jtzona  |  July 25, 2012 at 6:51 pm

    M, I hate “Not compatible with life”, I wonder often times if I had met you if Jody would be with us here. Its something that each mom that loses a baby to ARPKD struggles with, did we do everything, could we have done more, the questions are countless. When I look at what you and Julia do for ARPKD families I think there is hope. Yes educating more Dr.’s sure. But I think that when faced with the diagnosis parents need hope! You give them that.

    Reply
    • 2. threepeas  |  August 7, 2012 at 11:34 am

      Carla….. I never want you or any mom’s in your position to ever wonder what if but I’m sure that must be an impossible thing for me to tell you. But I do want to educate doctors and give mom’s hope. And also to help families make the best decisions for their family and their baby with some hope in that decision. I think about you and Jody all the time.

      Reply

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