Regarding the HemAware story concerning labor and delivery of a child with hemophilia, I can’t think of a worse, more scary outcome than described. More effort should have been made to convince the “Denton” family of the need for a safer, earlier delivery by C-section, over their misguided bias to have “natural” childbirth. This was not an example of the “right planning” (from the title of the article), and it did not lead to a “healthy outcome.” A child with a brain hemorrhage, exposed at an early age to clotting factor and the increased risk of an inhibitor.
Richard A. Lipton, MD, MPH
Hemophilia Center, Long Island Jewish Medical Center
New Hyde Park, New York
Dear Sue Kovats-Bell, RN, BSN,
I felt compelled to respond to your concerns expressed in the last issue of HemAware. (See letter below.) It appears you would prefer to either have the negative experiences by the family omitted or include a caveat that the complications would have been prevented if the HTC had been involved in the patient’s care. I applaud your self-confidence but feel it is misplaced. Dramatic events occur regardless of the assigned members of the team. I appreciated the article’s truthfulness. The article was completely appropriate.
Pat Blanchard, MEd, RD/LD, CDE
Widow of a lovely man with severe hemophilia A
To Whom It May Concern,
HemAware is a wonderful resource of information on bleeding disorder issues for consumers and providers. However, in the recent Winter 2010 issue, I found an incongruence with the title of the article, “Pregnant Pause: With the Right Planning, Having a Healthy Family is Possible” and the article’s lead-in example of a pregnancy of a known severe hemophilia A carrier with a known pre-natal diagnosis of severe hemophilia A of the son. This example then went on to describe the newborn’s dramatic bleeding complications that ensued post-delivery.
It is my opinion, it would have been better to either use a patient scenario consistent with the article’s message: known bleeding disorder diagnoses of mothers and infants should be PLANNED for by the staffs of the hemophilia treatment center and obstetric teams to PREVENT pre-natal, delivery and post-natal complications due to inherited bleeding disorder diagnoses, or the scenario should have included a more clear and obvious statement to the reader about it being used as an example to highlight what complications can occur when coordination of care from the HTC/OB teams does not happen.
As a hemophilia treatment center nurse coordinator, I am writing on behalf of my HTC colleagues to reinforce to the readers the remainder of the article's well-written messages: 1) The main objective of bleeding disorder care is TO PREVENT these kinds of scenarios (and others) from happening by planning treatment appropriate for your or your child's bleeding disorder, 2) Being connected to an HTC supports the additional goals of having your specific bleeding disorder care needs coordinated with other health care professionals, and 3) Having an advance plan in place with your HTC and other health care professionals maximizes everyone’s optimal goal of the PREVENTION of these kind of complication scenarios from ever happening.
Sue Kovats-Bell, RN, BSN
Hemophilia Nurse Coordinator
Hemophilia Clinic-West Michigan Cancer Center