When people ask me, “How’s Ben doing?”, I struggle with how to answer that question. My son has been in the Cardiac ICU his entire life; he obviously is very sick. However, I do respond with statements like “he’s stable” or “he’s having a good day today” or “he’s had a backslide.” It’s impossible to explain the in’s and out’s of Ben’s condition and what constitutes a good or not so good day for him, but here is my best summary of Ben’s heart story.
In December, we had an anatomy ultrasound at my regular OBGYN office. They noticed a tiny “blip” on Ben’s heart and referred us to a high risk maternal fetal medicine group as well as pediatric cardiology. We found out just days before Christmas that Ben had a severe congenital heart defect. The primary finding in all the fetal exams was that there was damage to his mitral valve which led to a lot of regurgitation or backwards flow through that valve and not enough blood flowing through his aorta. Though the size of his heart was relatively normal and though he had all the correct parts, they likened his physiology to a condition called hypoplastic left heart syndrome (HLHS).
Before he was born, we were preparing to go the single ventricle route. This meant that Ben would have a series of open heart surgeries to essentially re-route his heart to use only the right half. Once he was born, the studies of his heart actually showed that his left side was more functional than they originally thought. The plans changed direction to provide whatever interventions were necessary to keep Ben using both halves of his heart.
I’m oversimplifying this next phase to the extreme, but Benjamin’s heart issue is no longer just that faulty mitral valve. Ben has had catheter procedures and surgery to dilate, stent, and restrict various parts of his heart. In a nutshell, his heart does not adequately pump blood to all areas of his body. This inadequacy leads to poor oxygen delivery to some of his vital organs. Basic bodily functions like breathing, feeding, digesting food, and being stimulated make his heart work very hard.
There are dozens of cardiologists, surgeons, critical care physicians, nurse practitioners, nurses, pharmacists, therapists, and other health professionals weighing in on what’s best for Ben. The honest truth is that Ben’s physiology is extremely complex, and no one really knows why his body is working the way it is. Ben constantly presents the team with new challenges, and they have to adapt their plans quite often.
Just recently, Ben’s team has come to the consensus that a heart transplant is in his best interest. Never in a million years did we imagine that the “blip” seen on our 20 week anatomy scan would lead to our baby needing a heart transplant. This decision was not reached lightly, and as you can imagine, the news has impacted our family in many ways.
So what does this all mean? Well, Benjamin will remain in the hospital until a heart becomes available to him. Infant hearts are very hard to come by, and the average wait time is roughly 3-6 months. We know that he will be in the hospital at least that much longer. Life after transplant comes with many responsibilities and some restrictions as well. In the meantime, the goal will be to optimize all of his other systems to make him as strong as possible for when his big day comes.
Our intention is to do whatever it takes to give Ben the best chance at a high quality life. We continue to educate ourselves and advocate for our son to ensure that we are doing right by him. Every day is exhausting, but what carries us through is the unconditional love we have for all of our children. This certainly has been an emotional journey, and we are staying strong for our baby who doesn’t have any other choice. Ultimately, we take our days one at a time, and as always we remain #BraveLikeBen 
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