Henry’s Heart Story
| Told by his mother Erin.
Diagnosis: Hypoplastic Left Heart Syndrome
I absolutely needed to blame someone. And I was the most logical choice. Although I took good care of myself, I was a type I diabetic. Maybe I had lousy genes or a toxic uterus. Something had gone horribly wrong and now my child was going to suffer because of my biology. Oddly enough, I didn’t want to give birth to Henry even though my body had generated his multiple heart defects because I knew that once they cut the cord, Henry’s fight to stay alive would begin. And there were no guarantees. Everything did not turn out all right. In many ways, it turned out magnificently better than that. Seven years, countless cardio-thoracic surgeries and one new heart later, Henry is thriving. But this same family went through relentless fear and grief. My two older children often had their lives set aside for their brother’s hospitalizations. My husband and I forgot how to be anything but Henry’s advocates. As a family, we learned how to pass entire seasons in the PICU. Some of the best advice I received but did not take was from a hospital chaplain: “You have the right to grieve because you did lose your child’s good health.” All of us had been living too close to dying. We should have taken the time for family counseling — we were in mourning, eroded by fear and bills, confused by what to do next and, many days, barely hanging on. Now I know what I needed most. I needed another CHD mother — a mentor, a sounding board, someone who could help me move beyond self-blame and acute fear. |
~Erin, July 2009 |
We found about Henry’s heart the way many CHD parents do — the ultrasound technician got very quiet and then stepped out to find a doctor. The fetal maternal specialist could have explained what was wrong (Hypoplastic Left Heart Syndrome) a dozen times and I still could not have understood him. I was in shock and devastated to learn that Henry would be born in grave condition. Our team minced no words. Henry’s HLHS was so severe that he would spend much more time just fighting to stay alive than thriving like a mom expects her newborn to do.
I found myself sugar coating the truth to family and friends, not doing a very good job of it. There’s no reassuring way to say “My kiddo is missing an entire ‘room’ in his heart, has some septal defects and a flimsy valve.” It wasn’t that I needed to protect loved ones from the devastating news — I needed to protect myself. It phsyically hurt to be hugged. When people tried to reassure me by saying, “everything will turn out all right,” I had to bite my tongue. Part of me wanted to lash out and say “How do you know that? What evidence are you basing this gut feeling on because the doctors think this situation is really awful.”