Preface

For Heather, Janet, Pattye, Megan, Luciana, Kylee, Jenny, Tena, Karen, Taryn, Dianne, my mother and our donor family. They know where I have been. As blessed as you were to have these children, they were equally blessed to have you.

It could happen to you. It happened to me.

My plan was to have a third child, write my dissertation and begin working full time. God’s plan was entirely different. My life fractured when I found out my boy, Henry, had a train wreck for a heart.

This story has a happy ending, I promise. But there were times when I questioned whether it was worth it to put my child through several surgeries and finally a heart transplant. I say that now – without remorse – because I owe it to the other mothers who traveled similar journeys and have been so honest with me. I do grieve that my son suffered so much medically and there were dark moments when I thought I was asking too much of him. I became a member of the world’s crappiest club – mothers of sick kids. Many have now buried their babies.

This blog is not about how to care for a child with a congenital heart defect. Most days I do not feel qualified to parent a fern. Ask any of my girlfriends – my mothering advice is limited to how to dislodge a spatula from the DVD player and why corn dogs with ketchup contain all necessary nutrients for a child’s diet. This is partly a guide if your child is facing a lengthy hospital stay and partly the story of what my family endured in the six years leading to my son’s transplant. This blog also has suggestions on how you can help other families facing similar circumstances.

I often questioned whether I should speak so openly about my family, my former husband, Ned, and my three children – Gwyn the eldest, followed by her brothers Ian and then Henry. In the end, I decided writing about this was important because when I was in the midst of Henry’s heart surgeries, I could not find one resource that chronicled what mothers like me were going through. Congenital heart defects (CHD) occur in one in every 100 live births in this country. Thousands of children each year undergo one or more cardio-thoracic surgeries to correct moderate to severe CHDs. Henry’s particular defect, hypoplastic left heart syndrome (HLHS), is a grave condition requiring multiple surgeries with only a moderate success level and many of these children go on to be placed on transplant lists. Before Henry, I had never heard of HLHS. It would be several years more before I could accurately explain all that had gone wrong with his heart as well as what my family underwent in the midst.

If you are reading this because your family is facing a medical crisis, then I hope you will find this helpful, empowering and irreverent. It’s okay to laugh because there are so many other moments steeped in sorrow and fear. If you are reading this because you know a family caring for their critically ill child, then you are to be commended. There were literally hundreds of people who wanted to help us with Henry – they simply did not know how. Finally, I hope this ends up in the hands of those in the medical profession. It seems incomprehensible that aspiring doctors and nurses go through years of training but are very rarely given the chance, while they are still in training, to ask questions of families who have been on this journey.

This is not a linear story or one with a moral to it. It is the result of journal entries, conversations with other PICU (Pediatric Intensive Care Unit) mothers and the notes I took when meeting with medical personnel. Some entries are pieced together from my journals and I did everything I could to retain the emotional presence I had during those moments. Other entries are the result of writing long after an event happened, often because I could not yet put those words down on paper. I’ve made every effort to relay conversations accurately but I did not know at the time that I had a story to tell. Some of those transcripts are very telling: “SVC will require stint at later date, go down on Lasix 2x day, doc wears Italian shoes.” I observed doctors and nurses as a freaked out mother but also as the researcher I am. Long before Henry, I had been fascinated by how medical personnel were educated and how this training impacted their perspective of patients and their families.

These writings also have some God talk. I found my church home the same week I discovered I was pregnant with Henry and a recurrent theme is how God was present with our family every step of the way. Sometimes it was the overt manifestations of my faith like taking communion at Henry’s hospital bedside. Other times God let me know His presence through fortune cookie messages or the unexplained turnaround of Henry’s critical state. Many times God was present for me, I just wasn’t paying attention. For all the words I write here, they will never match the number of prayers whispered to the Divine asking for Henry’s healing. And every prayer, regardless of denomination, arrived.

I know who saved my child’s life. Surgeons repaired Henry’s heart to the best of their ability. When those repairs petered out, surgeons transplanted his heart. Nurses kept my child alive – let there be no doubt that the dozens of nurses who have tended to Henry are heroes to me. But Henry’s life was saved because a beautiful three year-old boy died and his family made a choice, imbued with Divine grace, to share gifts of life.

We’re often told that our children are not our own but rather lent to us by God to raise. Before Henry, I am not sure I believed this. I had pretty much figured out that kids were the result of having sex. What I’ve learned is this: our children are the best of us, our potential manifested in their sweet, squirming bodies. They will be more than we can ever imagine even when we pour all that we have into them. My daughter is, for now, mine to raise, but in the end we are both daughters of God. Henry was not delivered to me because he needed an incredibly strong mother. Henry arrived so that we could witness a miracle and be transformed by it.

I am a recovering control freak. Most days I believe the world would be a more orderly, peaceful place if people would just follow my directions. Over the last eight years, I’ve learned that I am in control of virtually nothing and that is for the best. All I am is a mom who once had this well thought out life plan. Then came Henry.