We wanted to take a few minutes to update you on our current family situation. As some of you know, and some do not, we learned in early April that our unborn baby boy (Charles Andrew AKA Charlie) has a very rare and life-threatening congenital heart defect. Over the past few weeks we have seen numerous specialists to confirm and further detail his diagnosis. We have many more appointments to come and the upcoming months will continue to shed light on things for us. At this point our baby boy has been diagnosed with Hypoplastic Right Heart Syndrome including a Double Inlet Left Ventricle with Transposition of Great Arteries, Aortic Hypoplasia and a Ventricular Septal Defect.
In layman’s language it means that only 3 of the 4 chambers of his heart are functioning and at this point the vast majority of his blood flow is going to his lungs (as opposed to his body). Both of the atriums in his heart are dumping blood into the left ventricle – the the left ventricle is pumping blood to his lungs. His aorta, which pumps blood to his body, is too small and connected to a ventricle that is not properly functioning or growing. The good news in all of this is that to-date, he is thriving and growing as any normal baby would. He currently shows no signs of distress in the womb and has a healthy and steady heartbeat.
He will need several open heart surgeries in order for him to sustain life; the first of which will most likely be in his first week after birth. All of the surgeries and details are, of course, pending the (relatively) healthy arrival of baby boy come August. At this point in time we are still planning on a standard delivery but it will be with a high risk OB and at a hospital in St. Louis that is better equipped than our local regional hospital. The neonatal and cardiac medical teams will be waiting for his arrival in the delivery room and will immediately start him on heart medications, breathing treatments and nutrient IVs. We are told we will have a precious few minutes with Charlie before he is whisked off to the local children’s hospital NICU where he will await his surgery. Some tests will have to be rerun and new tests will be administered. Then we will have our final course of action and timeline. Assuming that mom can get up and moving relatively quickly, the hospital will issue day passes so Jean can visit Charlie in NICU in the days before his surgery and before her official discharge.
We know that after his surgery he’ll spend a period of time in the PICU before being discharged to home. We’ll be coming home with oxygen tanks, a hospital-grade pulse-ox meter, and probably a hospital-grade breast pump because it is very likely that Charlie won’t have the energy to nurse. We know our lives are about to change in many, many ways – but we’re grateful that we have such wonderful friends and family to support us.
Right now all we need are good thoughts and lot of prayers! As things or needs change, we will continue to keep everyone updated as best we can.
Thanks in advance for the love, thoughts, and prayers!
Jean, Matt, John, Nathan and (ESPECIALLY) Charlie