Would you take a chance or just forget it?

rare disease
Nurse S

I have a situation…I have 2 children one which had a liver transplant when he was 4 months old, due to a VERY rare liver disease called tyrosinemia type 1, we were told if we ever had any more children that there was a 1 in 4 chance that they would also have this condition. I have spoken to some families that also have other children with this disease and 2 families of 4 have 3 children with this…….so, would you take the chance of having another baby that would possibly have the same thing……for the people that know about NTBC, it didn’t work for my son and I really don’t have much faith in it for a treatment.
Just incase anyone doesn’t understand what Tyrosinemia is…..it’s a rare condition where Tyrosine an amnio acid in ALL protein can not be digested which then makes the liver and kidneys have toxic waste to digest and they are unable to which then in turn leads to liver failure and possibly kidney damage or failure

Angina Info

6 Comments so far

  1. way2sexy4u on March 17th, 2009

    yea da baby deserves a chance in life even tho somethin wrong but it’s possinle they didn’t say it wud

  2. believerchick on March 18th, 2009

    yes life is too short but it is choice but for it is yes

  3. Penney S on March 20th, 2009

    IF IT WERE MY CHOICE I WOULD DEVOTE ALL OF MY ENERGY TO THE CHILDREN YOU HAVE ALREADY BEEN BLESSED WITH

  4. jennifer c on March 21st, 2009

    I know there is nothing like being pregnant and having that feeling of life growing inside you, but, there are a lot of children out there who don’t have loving parents as it sounds like you are. Why take the chance when you could help out a child already on this earth. Good luck in your decision and I will add you to my prayers.

  5. chapaton on March 22nd, 2009

    I don’t believe in taking chances with genetic diseases.
    For me it is like the people who know they have cystic fibrosis baby already, and choose to try again to hopefully have another child.
    I’m assuming you are talking about Thalassemia Type 1. or Alpha Thal.
    I guess I wouldn’t chance it.
    If you know about alpha thal, then you know that you and the dad of the baby caused it, maybe have invitro with someone else’s egg… or implantation of someone else’s embryo…
    You would carry the child
    Raise the child
    It would be your child
    And it would not have a genetic chance for this condition.
    It’s heartbreaking having a child with a condition such as this.
    Perhaps adoption of a child….
    There are a lot of options.
    The biggest questions are:
    Would you want your next child to go through what your first did?
    Would you terminate the pregnancy if you found out something was wrong with your fetus?
    Good Luck to you.
    Please find some support groups to talk about this with… And talk to a high risk OBGYN to see what your options are at this point.

  6. dramateen1989 on March 27th, 2009

    If you want another child, then by all means you should have another. If everyone were to not have children because of some disease or malformation, then the human race would probably die out. My aunt sickle-cell anemia and she is sick most of the time, and the doctor told her and my uncle that there was a 1 in 2 chance that their child would have sickle cell anemia but if they didn’t have sickle-cell anemia they would still be a carrier of the trait. But she and my uncle went on with their pregnancy and went on to have 3 more children and only 1 has sickle-cell anemia and all 4 of them have the best personalities of anyone I know. Life is a miracle no matter what.

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