I don’t know what button was pushed, but suddenly instead of 2 nurses in the room there were MANY. Lydia’s external pacemaker—the one in place while we waited to see if her heart rhythm would normalize after open heart surgery or if a permanent pacemaker would have to be placed—was malfunctioning. A lead connecting the external device directly to her heart had completely severed in a fluke equipment failure. We had anxiously been assessing her stressed symptoms when we realized this. In that moment, the head nurse steel-eyed me as the room filled with people and a cart full of equipment and said, “Normally I would use anesthesia, but this is an emergency...” She then sewed a thick metal grounding wire into Lydia’s stomach while another nurse and I held my screaming 5 month old down. I was terrified. She was in incredible pain. I didn’t know any of these people and the situation was completely out of my control. One of her life-sustaining organs wasn’t working and neither was the equipment supposed to save her. It. Was. Hell.
I will never forget that day or those feelings. I thank God for every miracle that allows her to still be with me, today.
This is just one small example of what medical trauma looks like. In addition to facing the pain of diagnoses & surgeries, there are always desperate, unpredictable moments that crop up. These incidents are often accompanied by months+ of PTSD symptoms. I belong to several online support groups and one of the MOST COMMON requests I see in the local heart family group is “Where do we find a counselor? For my heart warrior. For their siblings. For our marriage. For me.” It is a staggering problem; one I know, personally. We are not doing enough to support these families.
I recently attended a lecture for heart parents in which a licensed therapist was asked point blank why there was not emotional support or counseling provided for parents of cardiac patients at our local children’s hospital (which serves about 5 states). She regretfully gave this heart-breaking answer: Counseling* is not provided to anyone who is not the direct patient because it is considered a “lost cost.”
In short, “Who pays for that?”
The answer is, especially when no support is provided, EVERYONE. Providing counseling to a five month old is pretty futile. All that baby wants is what she knows as security—Mom and Dad. And if they are falling apart? Well, good luck.
I cannot emphasize how desperate the need for emotional support for families of critically ill children is. Especially when some hospital stays last months and treatments are lifelong. The consequences for not providing this type of care affect the patient, the entire family, and society as a whole. The statistics for marriages in these households are not good. The statistics for the emotional well-being of patients long term are even worse. Medical trauma is real and when untreated wreaks havoc on patients, families, and communities, alike.
February is Heart Month & I felt this was the most important thing I could share. For every post you see about raising awareness for the physical treatment of CHDs (1 in 100 babies will have one), please consider the emotional battles fought, as well. The pain and consequences are real. We HAVE to do better.
I recently joined the board of a local nonprofit that provides support to heart patients and their families, including those who have lost family members to CHD. There is absolutely a supportive, knowledgeable community there for families fighting CHD! But there are things everyone else can do to help, too. Speak up. Normalize mental health practices & therapies. Donate time/money to support groups or emotional wellness programs. Recognize that physical & mental health must be mutually treated. Listen to a hurting friend. WE CAN DO MORE. It matters.
If you are struggling, please don’t do it alone. Ask for help. It’s a good thing. 🙏🏻💛
*Our hospital does provide social workers, however they are severely understaffed. We heard there was someone assigned to the cardiac ICU, but Lydia’s nurses were the ones who (on top of their medical assignments) completed the tasks our SW would normally do such as securing overnight hospital accommodations for us and offering limited (but treasured) emotional support.