A Reality We Cannot Forget

I should be at the gym right now. I should be in a cycle class, on a treadmill, or on an elliptical machine. Instead, I am sitting here with my cup of coffee, in tears, and terrified. Last night before I went to bed there were multiple posts about a mom needing help to get her son transferred to Boston. Two days ago he was fine. Last night, he was in the ER at his local hospital. No warning. No signs. No mercy.
There is one particular mom who is also a nurse and part of the BCH family. She was doing everything she could to help him get transferred to Boston. All of his surgeries were done here, and he needed to be where people knew how to take care of him. She was posting, calling, trying to get one hospital to speak to the other (at least, that was my impression from the conversations) and I was amazed at the lengths she was going to in order to make this transfer happen. She can be on my team anytime.
This morning I got up, had a cup of coffee, got into my gym clothes and checked my phone to see if there were any updates. I had prayed for the family before I went to sleep and was hoping that there would be a message about getting ready to fly to Boston. They live 8 hours away.
Instead, there was news that he lost his fight 30 minutes after I went to sleep. They were in the process of notifying family and I am sure the mother was in complete shock. Dumbfounded I sat in front of the computer in tears. This little boy, whom I have followed on Facebook since I was pregnant with Isabelle. Little boy with a big smile, brown hair, and who had the same defect as Isabelle. Little boy who a few days ago, was playing and happy.

What gets me about this is how unpredictable CHDs are. I know people look at Izzie and think she looks great. She does, but there is still a time bomb in her chest. That will NEVER go away. We can live each day as if that weren’t the case but it always is in the back of my mind. I cannot imagine losing her so unexpectedly like that, but I know this mother felt that way too. Surgery is PALLIATIVE. It isn’t a cure. It helps her survive to the next step- whether that is the next repair or a transplant. It will never go away. And that is true for all CHDs. I know there are people out there who have had repairs and act as if that were a chapter in their lives that is over. I know these people personally, and it surprises me that they are so disconnected from their history. Surgery is not a cure. Children still die from CHDs even after they are ‘fixed’. Some of these people have done nothing for CHD awareness as if it doesn’t apply to them. Well, I am fixed, so I guess I don’t need to wear red or post anything about my experience. Yes, I am judging. I am judging because someone died last night to a disease some survivors pretend not to have. It makes me so angry that another mother is going through a loss so terrible I have nightmares about it.  I am judging because people should know more about the most common birth defect in the world. A silent killer just like cancer. The end result is the same.

When our children reach milestones, we all celebrate together. When someone’s child dies like this, we all mourn with her. A mother’s cry rises up to the heavens while we all stand silently beside her. There is not one dry eye in the HeartLand this morning. This was one of our boys. Our CHDers. Our family. I have never met this little boy, but this morning my heart is broken. The loss is terrible and resonates within me and countless other heart moms who have prayed all night.

There is no cure for Isabelle. I don’t know how else to say this. She is doing well and we have been so blessed. But both of us wonder when our good fortune or if our good fortune will run out. This family lived 8 hours away from Boston. Another point I would like to make is how grateful we are for being an hour away from our Heart Center. I cannot imagine how powerless this mother felt as she struggled to get him where she knew he needed to be. Stop for a second and imagine watching doctors, nurses and trauma teams try to resuscitate your child while you stand helpless by their side. A child you cared for, protected, and loved. There is nothing natural about losing a child, regardless of the disease. Please keep this family in your prayers. Our hearts are with them.

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