Preface
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.
October 2009
Erin
Taylor/Jack Staley