More For Baby Martin And Family

[Papist]

Please, please continue to pray for baby Martin and his family. Here's an update. That last paragraph got me tearing eyed and furious. God bless you all!!

 

 

Written by the mom,

 

This morning we received a call from a nurse practitioner with Dr. Tworetzky's team at Boston Children's Hospital. The NP wanted to explain what BCH offers as an alternative to the standard Single Ventricle Palliation course of treatment (also called the Fontan Sequence, it requires open heart surgeries at 1 week, 4-6 months, and 2-3 years of age).  This experimental treatment is called Primary Left Ventricle Rehabilitation (PLVR).  If an infant with HLHS has a left ventricle and a mitral valve that show potential for rehabilitation, during the initial open heart surgery at 1 week of age the surgeon can painstakingly remove fibrosis from the left ventricle and potentially repair the mitral valve. So, rather than opening up the wall between the ventricles and creating a single-ventricle heart, the surgeon will be giving the left ventricle a chance to heal and function again.  The NP called it "challenging" the left ventricle.

If successful, PLVR requires close monitoring, frequent tests, and multiple interventions (to further fix or possibly even replace the mitral and aortic valves).  Long hospital stays and frequent visits to Boston (the only place they do this) would be required.  The extra work done during that first surgery necessitates that the baby to be on a heart/lung bypass machine for a longer time, which puts it at greater risk for neurological issues.  And, because this route of intervention is still experimental (the NP guessed that it's been done fewer than 50 times), it is very risky overall.  The success rate is less than 50%.  That's a lot of investment without guaranteed positive results.

So why consider it at all?  If successful, the procedure gives the child a functioning two-ventricle heart.  2 ventricles = less stress on the heart = less chance of early heart failure = less chance a heart transplant would be necessary for the child to survive into late adulthood.

We are open to this option.  We want to give Martin excellent chances for health, well-being, and long life!  But we both came away from this phone conversation feeling that PLVR may not be the right choice for our baby.  They would need to review results of another fetal echocardiogram in a few weeks to tell us whether Martin is a good candidate, but we are currently doubtful of the results.

And would you believe that the nurse practitioner felt compelled to tell us that, if we had detected this heart defect earlier in the pregnancy, we could have terminated?  And that "comfort care", or letting the baby die without any intervention after birth, is also an option for us?  David promptly informed her that those are not options for us and politely concluded the conversation.  We're going to embrace Martin's life, however long God gives him to us, and give Martin the best chance we can by making informed decisions for his medical care.