Anyone have knowlege of Beta Thalassemia (decrease production of hemoglobin)

by jam 9 Replies latest jw friends

• 

  jam

  My daughter(JW) recently inform me she has Beta Thalassemia,

  pass on from her Mom, my Ex. She have two kids, both born around

  9.5lbs. Another child is due in March. My concern, she is older now 32yrs.

  She call me last nite and told me she dismiss her doctor because (blood issue).

  Now she have A mid-wife. I ask her to research the WT stand on the

  problems she may face. I ask do you really know what the WT. teach,

  she claim she does. To make A long story short, she agreed to consider

  my research. If anyone have this condition or know someone who has

  it, I would appreciate some input. Should I be concern?
• 

  mummatron

  If she is certain it was only passed on from her mother and that she only has the 1 defective gene, then she has Beta Thalassemia Minor (Beta Thalassemia Major involves 2 defective genes inherited from both parents). I would imagine this is the case as she already has 2 children and was previously unaware she had the condition, so one would expect it to have been detected beforehand given the more severe nature of the Major condition. The Minor condition is a form of anaemia. There's a 1 in 4 chance the baby may have inherited it as she will be a carrier of the defective gene.

  Don't worry yourself about it as the Minor condition is very manageable with iron supplements and blood fractions in the event of blood loss during labour. Also, age is less of an issue in childbirth these days than it was only as little as 20 years ago. Women who are now considered 'older' mothers (late 30's onwards) are monitored more closely. Your daughter will probably be given iron tablets and have her blood tested every 2-4 weeks.
• 

  jam

  Thanks Mummatron; Yes she only has the one defective

  gene. I worry when the blood issue comes up with my

  kids that are still JW.
• 

  rebel8

  She call me last nite and told me she dismiss her doctor because (blood issue).

  Now she have A mid-wife.

  Is she unwilling to accept blood fractions? I am wondering why else she would fire her dr. over a blood issue.

  Now she has a midwife. So she is giving birth at home? How will her special medical condition be cared for?
• 

  jam

  Rebel 8; The blood doctrine is so confusing

  to the average JW. So when there may be

  A problem concerning blood, the average JW will

  request no blood, just to be safe.

  She claim why she dismiss her doctor, because her

  doctor was scheduling her (my daughter) for un-necessary

  tests. The doctor was concern because of her condition.

  My big concern, my ex and I lost our 3rd child at birth, she

  has the gene. We had two kids later, four total.
• 

  JustHuman14

  Send me P.M I will tell you regarding Thalassemia. Does your daughter has Intermediate Thalassemia, since there are different kind of forms on this blood disorder. There are people with Thalassemia that they might not need at all blood treatment and can have a normal life.
• 

  jam

  justhuman14; Need A little help. I have never

  sent A P.M and I have never receive one. What

  are the steps. Thanks. I will call her and get more

  details.
• 

  JustHuman14

  Can you tell me if your daughter has Thalassemia Intermediate? Did she had the children prior of being a JW? The reason I' asking is that people with Severe Thalassemia are hard to born children. Usually hemoglobin is stable, but if there is a decrease on Hemoglobin then she will have to take medication to increase it. I know she will not accept blood treatment since she is a JW, but she must have alternative medication immediate. I don't know your location but in my parts of the world (Greece) Thalassemia was common for many years. Have a look at the links bellow:

  http://www.cure2children.org/

  http://www.thalassaemia.org.cy/

  The main reason is the abnormal marrow function and the cure is a marrow transplan. In order to face this she must take a combination of vitamins(appart with other medication) in order to help marrow to increase the production of red cells, since this is the issue with people suffering from Thalassemia.
• 

  Anony Mous

  That's a good point to kick the WT to the curb. I did after they told me that I should sacrifice my child for their faulty interpretation of the blood transfusion. There is not much you can do however if they're believing in it, maybe you can convince the father? Depending on your state, she might not have a lot of choice in it either, in our state CPS actually protects the child from these culty practices.

  Choosing a mid-wife over a doctor for the blood issue is not a good idea. There is no good doctor in the world (or at least in the US) that wants to take on a planned birth with someone that is adamantly refusing taking even plasma (whole blood is not used). The danger of bleeding in the mother and legal repercussions over a newborn child possibly dying because the mother has bled to death is simply too much for most doctors to accept. The problem is not the mother dying by the way, the mother can sign that right away but a baby can't and that's where the legal aspect comes in.

  The issue with a mid-wife (if a mid-wife would accept her if they know the risk) is that the mid-wife does not make such decisions. If something goes awry, the mid-wife calls in a doctor (or has one staffed) and then we're back to the same point. Depending on your jurisdiction, again, she could lose custody over her yet unborn child if she keeps it up, that usually stuns and throws some of these extremists back. My wife was pressured, she asked to call the HLC (the JW 'representatives' for blood issues) and they didn't want to touch it with a 10 foot pole and told us to use our 'conscience', they literally blew us off. We eventually signed off on accepting plasma in the heat of the moment (always a good way to have them accepting, when you're lying there in agony and every second you wait it gets worse). Yes, it's an evil way of doing things but that's what I did and hopefully my child will eventually appreciate why I became a worldly person.
• 

  jam

  Thanks JustHuman14: for the info. I email that info

  too my daughter. She have Thalassemia intermedate,

  so I feel A little better about her condtion, after reading the

  info. Yes she was born in, so she was A JW at the birth

  of first two.

  Anony Mous: I appreciated your point you made, the problems

  that may arise with A mid-wife. I enlighten her of those possibilties.

  So now have A back up plan. She lives 5min. from the hospital.

  I have talk to her husband and he assure me any complication

  he will take her to the hospital. And this was A surprise, they

  see nothing wrong with storing her own blood to use if necessary.