Friends Of My Family

[Papist]

The mom and dad are the soon to be godparents of my son, Sam.  Please pray for them, especially the mom and baby Martin.

 

At our appointment yesterday, Pediatric Cardiologist Dr. Herlong explained that his colleagues at Children's Hospital of Boston evaluates cases like ours for their potential to participate in an innovative in utero intervention.  Dr. Herlong sent our echocardiogram to them last night and we should hear within the next 24 hours whether we qualify (factors include various measurements they took of baby's heart as well as maternal age and health).  If we are offered the option, we would have to weigh the considerable risks and benefits of this procedure.  And we would have to decide quickly, since Martin will be 25 weeks gestation on Sunday and they don't do the procedure after 26 weeks gestation.

Here's what little we know about the procedure: Mother and baby undergo general anesthesia.  Doctor inserts a catheter through the uterine wall (mother's belly) and directly into the baby's chest.  Doctor guides the catheter to the aortic valve and inflates a balloon at the catheter's tip to open the valve and allow blood flow (balloon valvioplasty).  If successful, the baby's left heart chambers will begin to work more effectively and progression of the Hypoplastic Left Heart Syndrome will be stopped or slowed.  After birth, the baby would undergo another procedure to break down the fibrosis that had developed in its left atria.  Further catheterizations and maybe even valve transplants would be necessary, but the baby's life expectancy and quality of life could be significantly increased.

The cons: this is only done at Children's Hospital of Boston, so we would need to travel and stay there for the in utero procedure, the delivery, and the post-birth procedure and recovery.  Because this is out-of-network, it would be a tremendous expense, and the logistics would be extremely difficult.  The in uteroprocedure could jeopardize the remainder of the pregnancy, and it could simply fail.  Some babies have died; others have gone on to develop HLHS anyway.

May God guide us!