The Surgeon's Report

Yesterday we met with Dr. John Petty, one of the three pediatric surgeons at Brenner Children's Hopsital (Baptist Hopital) where Baby Girl Hardy will be transferred after delivery and stabilization.  First of all, let me say how wonderful all the doctors that we have worked with are.  We have been truly impressed by not only the professionalism and knowledge of these doctors, but their overwhelming care and concern for us as people and as parents.  We are so very very grateful that we live where we do and that we are receiving and will continue to receive such a high standard of care.  Dr. Petty, much like Dr. O'Shea on Friday, spent over an hour talking with us about Baby Girl's condition and explaining to us the things that we can expect after she's born.  Much of what he said we had heard before, but it was great to hear it confirmed by another doctor.  We feel like we are being so well prepared for the struggles and trials that we will all face together as a family once she joins us.  Here are some bullet points from our conversation with him.  We share these specifics so that you can better understand where we are, but also so that you will know ways to pray specifically for Baby Girl's health in the months ahead. 

• The ability to predict now (at 20 weeks of pregnancy) how Baby Girl will do once she's born is very poor.  There are some studies with indicators and ratios and markers, but the bottom line is until she starts trying to breathe air and we can see how she does with that, we will not know exactly where we fall on the very wide spectrum of CDH (Congenital Diaphragmatic Hernia).
• The problem with her condition is not so much the mechanical, physical issue of the diaphragm hole and the misplaced organs (although that will certainly have to be addressed).  The problem is pulmonary hypertension (blood pressure in lungs).  We are praying that her pulmonary hypertension after birth is not severe and that she will be able to receive the treatments that are available to her and respond favorably to them.
• Doctors' thinking about CDH has changed in the last 15 years.  It is now not so much about fixing the hole immediately as it is about stabilizing the baby, seeing how she responds to treatments for pulmonary hypertension and then repairing the hernia.
• A "last resort" treatments for infants with pulmonary hypertension is ECMO (extracorporeal membrane oxygenation).   Brenner's is one of the few places in the state that does ECMO so they see a lot (relatively) of CDH cases, approximately ten a year.  His rough estimate of the CDH cases at Brenner's is that about 3-4 of those 10 go on ECMO and about half of those babies will survive.  Therefore, Brenner's overall survival rate for CDH is around 70-80% (these are rough estimates, not necessarily statistically accurate numbers.)  The national survival rate for CDH is between 50-65%.
• The range of stay in the NICU (or PICU if ECMO is required) is anywhere from one month to seven or eight months.  
• The surgery is done one of two ways.  If there is enough diaphragmatic muscle, they will try to close the hole by stitching muscle to muscle.  If not, they will "patch" the hole which may require additional surgery down the road as the baby (and her diaphragm) grows.  The incision is below her ribs.  They hope to be able to do the surgery within a week after she is born, although that may be a little longer if she ends up having to go on ECMO.
• We looked at the MRI films again.  The surgeon said that her right lung looked "normal".  While the radiologist noted that there was no left lung present, Dr. Petty also said that he thought there probably was a little bit on the left side as well.  While this is certainly good news (and we will continue to pray that she is able to develop as much healthy lung tissue as possible), he also said that the size of the lung was not necessarily an indicator of how successful the baby would be.  The greatest indicator is the pulmonary hypertension (which we won't know the details of until she is born and begins breathing air.)

This is a lot of information for us to process and consider as we look ahead to Baby Girl's birth and preparing for her to have the best chance possible at life.  We were especially grateful for some of Dr. Petty's closing remarks.  He encouraged us to enjoy the rest of the pregnancy, to be grateful for the gift of a child that we have been given, and to celebrate her coming into the world.  "Paint the nursery, and have fun getting ready for her," he said.  He echoed the many other doctors who have assured us that we have done nothing wrong to cause this condition and that as long as she is in my womb she remains safe and healthy, breathing through the placenta.  We are looking at the months ahead as a chance to adjust our expectations of her first few weeks and months of life and to grow more and more excited about her joining us and being a part of our family.  We know that we have changed our perspective on becoming parents and on what really matters in the last couple of weeks.  As hard as it is to receive difficult news like we have received, we are grateful for the opportunity to prepare and pray for her healthy growth.  The generation before us would never have even known that this was ahead of them.  We'll have the best doctors on standby and ready to respond and hundreds of you out there, praying for her success as well.   That's a pretty good report.