Hello Marisa-

 

I'm Sarah and my daughter is a Jacobsen Child.  I wanted to put my 2 cents worth in this conversation due to the platelet issue.  Have the doctor's do the test for Paris - Trousseau Syndrome.  It is the platelet dysfunction that Jacobsen's children have.   A rare blood test and hospitals will NOT normally do this test.  It will tell you if your child has the platelet problem and its severity.  Our daughter was fortunate to not have a severe case and we still had many difficulties with bleeding ------ and clotting.

 

My daughter had a heart transplant last Dec. and while recovering would repeatedly develop clots.  It is believed that after a severe /major surgery, the body will begin developing clots.  She had to have the clots dissolved a couple of times and then a Greensfilter was placed in her inferior vena cava to protect her from future clots.   Giving our children heparin to dissolve clots can be extremely dangerous but necessary if clot formation occurs.

 

I don't know if other families that have had major surgeries have had the clotting problem.  I'd like to hear from anyone else that has experienced it.

 

If your child has severe heart defects, keep something in mind.   More transfusions your child receives in their lifetime, more of a chance they will NOT be a candidate for a transplant.  More exposure to antibodies will increase their chances of organ rejection.  So my daughter must have a SINGLE platelet donor which cuts the antibody exposure down.   Most platelets are collected from numerous donors and mixed together.                        If you are able to get a doctor to give only SINGLE donor platelets, you may be glad you did down the road.  It takes several days of planning to get the platelets due to the extremely short shelf life of platelets.  If memory serves  me well, self life is only about 5 days and it takes 2 1/2 days to prepare platelets.

 

So if surgery is planned, please seriously talk to your doctor.  First to see if your child has Paris Trousseau and secondly, have single donor platelets made available for your child.

 

Hope this helps -- I always liked any info. I could receive from others.

 

Good luck with the surgery.

Sarah (KY)