Wednesday, July 17, 2013

Some good news!

Sorry this post is a little delayed.  I know many of you are wondering how our appointment at Mott Children's went.  It was an anxious week leading up to the appointment but we actually got some relatively good news.  It's been a huge relief.  

We had our followup fetal echocardiogram at the CS Mott Children's Hospital at the University of Michigan were we met an amazing team of people who work in pediatric cardiology.  While the test showed that Caroline does indeed have aortic stenosis (a narrowing of the valve that is located between the left ventricle and the aorta), the doctor's diagnosis was far more positive than that we received in Italy.  This narrowing has put increased stress on the left ventricle and caused some reverse blood flow, or regurgitation, from the left ventricle to the left atrium.  The doctor said that both of these conditions are to be expected given the stenosis.  Due to the fact that Caroline's stenosis is moderate to severe and that she does have partially reversed blood flow in her heart, her blood is flowing both right to left and left to right, our case is being reviewed by the head of the pediatric cardio unit to see if fetal intervention is necessary.  The doctor we saw was fairly certain that it would not be.  We have an appointment with a high risk OB as well as a follow up fetal echocardiogram in the coming weeks to confirm the diagnosis.  (They were not able to see all of the aortic arch this time round and are hoping get a better view next time.)  Of course anything can happen but the good news is that if everything goes according to plan, I should be able to carry Caroline to term and have a normal delivery without problem.  

Immediately after birth, the doctors will put Caroline on an IV medication to ensure that the duct between the aorta and pulmonary artery remains open (it usually closes after birth).  They will then perform tests to determine the best course of action.  The best case scenario in the short term would be to insert a catheter into her heart and inflate a balloon inside of the aorta in order to widen the opening in the artery.  If the blockage is more severe or if the aortic arch is affected, immediate surgery might be required.  Depending on how things progress, Caroline will likely need to have the aortic valve replaced but when is unclear.  It could be when she is an infant, a toddler, or a teen, it all depends.  While Caroline's condition is still serious, this is obviously a big improvement from what we were told in Rome.

The doctors here said that 8 out of a 1,000 babies are born with heart defects.  Of those heart defects, aortic stenosis is the most rare and occurs more often in boys than in girls, so little Caroline is a special case.  C.S. Mott Children's Hospital is recognized as one of the best in the United States for this sort of thing and the team of doctors there have presented us with workable treatment options.  We are incredibly lucky that Ryan's family lives only an hour away.  The current plan is for me to stay in the States until the baby is born and for a short time after.  I am being set up with a high risk OB, a genetic counselor, and a social worker, all who will follow our progress through the rest of the pregnancy.  

Thank you again for all of your thoughts and prayers!  We'll keep you updated as things develop.


  1. Blessed Louis & Zelie Martin, Blessed John Paul II pray for Caroline, Ellen and Ryan! With love and prayers from Laura and Peter Quinn

  2. Ellen and Ryan,

    Matt and I (Matt played soccer with Ryan at UD) wanted to let you know that your whole family is in our prayers. We are expecting our third baby boy, Charlie, in 3-4 weeks and he is a heart baby as well. He will have a series of 3 or 4 open heart surgeries which will ultimately reroute his entire bloodstream and leave him with 3 out of the 4 chambers of his heart functioning. Charlie will start on prostaglandin at birth as well.

    It's been an emotional roller coaster since our diagnosis at 19 weeks gestation. We've been blessed with lots of support and prayers from family and friends. I'm certain you'll see the same!

    In the meantime, let me offer you the best advice I've gotten to date: Rejoice in your baby! Celebrate the kicks, decorate a nursery, buy some baby clothes... You are having a baby! Not a heart defect!

    I've tried to keep this at the front of my mind whenever I have a rough day. It's really helped in a lot of ways.

    If Matt or I can be of any assistance please let us know. We are happy to share our experiences, emotions, concerns, insight, knowledge, etc with you as you travel this journey. We're still newbies at this as well, but at the same time, the experience is still very fresh and real for us. Please feel free to reach out to us at

    In the meantime....

    Lots of UD love and prayers...
    Jean Garcia (Class of 2003)