The house was quiet. It was a spring day in 2011, mid-morning. My two older boys were at their preschool. Mike, my husband, had left for work hours ago. And Matthew, my youngest, my precious two-year-old, had just gone down for a nap.<\/p>\n
I sat at my computer. I clicked over to the Facebook page that had become one of my go-to\u2019s, a page for parents of children with congenital heart defects. Kids like Matthew.<\/p>\n
It took a moment for me to start reading without feeling distracted, without worrying whether Matthew was eating enough to keep growing, to keep his heart from failing. I wanted to understand this ailment, to give some meaning to these families\u2019 suffering, to somehow find a ray of hope.<\/p>\n
\u201cOur daughter died three days after we brought her home from the hospital,\u201d one post read. \u201cWe never knew about her heart defect. Until it was too late.\u201d<\/p>\n
There were so many posts like that. Families whose babies never had a chance because no one realized anything was wrong with them. The saddest thing was, it didn\u2019t have to be that way.<\/p>\n
People had posted that a simple test, a sensor placed on a newborn\u2019s finger, could measure the baby\u2019s pulse and blood oxygen level, and give an instant indication of a possible heart abnormality\u2014 the most common of all birth defects\u2014and, most important, a chance for corrective surgery.<\/p>\n
But most hospitals didn\u2019t screen newborns for this. Only two states\u2014Indiana and New Jersey\u2014had passed laws requiring the test. In Indiana, a mother had pushed for the change\u2014after the death of her baby girl at five days old.<\/p>\n
I couldn\u2019t imagine her sorrow. It had to be unbearable. And yet look what she\u2019d done\u2026<\/p>\n
I heard Matthew stirring in his bedroom. We\u2019d been so blessed. Even now the memory of the grim discovery during a routine ultrasound\u2014the thought of what might have been\u2014made my chest tighten.<\/p>\n
\u201cYour baby has a problem,\u201d my obstetrician said, his face drawn. \u201cThe right ventricle of his heart hasn\u2019t developed. He has only half a heart.\u201d<\/p>\n
How could this be? I was 23 weeks along. Everything had seemed fine, no different from my first two pregnancies.<\/p>\n
\u201cHe\u2019ll need multiple surgeries,\u201d the pediatric cardiologist told us later that day. \u201cBut even that may not be enough. It\u2019s going to be a major challenge for all of you. I\u2019m sorry I can\u2019t be more hopeful.\u201d<\/p>\n
For the next four months Mike and I prayed. I prayed for a miracle. For strength. For comfort. Most of all, I prayed for understanding. I\u2019d always believed that God has a reason for everything that happens. But what good could possibly come from this?<\/p>\n
My care was transferred from my local doctor to a specialist at Columbia-Presbyterian Hospital in New York City. Mike went with me every other week for tests. But the prognosis never changed. Our only hope was that the baby would live through the surgeries.<\/p>\n
Still, what would his life be like? Would he be frail? Would he be able to run around with his brothers? \u201cI wish I could tell you,\u201d the doctor answered. \u201cBut there are a lot of unknowns. It\u2019s important, I think, to stay focused on the present.\u201d<\/p>\n
I needed something more than that. Something I could cling to. Anytime I couldn\u2019t feel the baby kicking, my worries went haywire. Was he okay? How was I supposed to know?<\/p>\n
Then one day a word came to me, one that lingered in my mind. That night, when Mike came home from work, I said, \u201cI thought of a name for the baby.\u201d<\/p>\n
\u201cMe too,\u201d he said, looking surprised. \u201cWhat do you think of Matthew?\u201d<\/p>\n
\u201cHow did you know?\u201d I said.<\/p>\n
We looked it up in our baby name book. \u201cGift from God,\u201d I read.<\/p>\n
I said a new prayer: \u201cDear God, I\u2019m so scared. But I know Matthew\u2019s in your hands. All I can do is trust in you.\u201d I felt a sense of peace wash over me. God was at work in Matthew\u2019s life.<\/p>\n
Matthew was born a few weeks later on August 6, 2008. A nurse rushed him to the neonatal ICU before I could even hold him.<\/p>\n
A team of surgeons and nurses performed the intricate job of bypassing the right side of our son\u2019s heart, enlarging his atrium and ventricle and disconnecting the blood return in order for it to take on the workload of a whole heart.<\/p>\n
\u201cIt\u2019s vital that he grows at a normal rate,\u201d the doctor said when we were finally able to take him home, a whole month after he was born. \u201cThe challenge is that with his heart working twice as hard, he\u2019ll need more calories. But he\u2019ll also be tired, so he won\u2019t want to eat. We\u2019ll weigh him once a week.\u201d<\/p>\n
Caring for Matthew became my sole focus. For the first six months I fed him breast milk every two hours, coaxing him to eat as much as he could. Mike was a huge help, seeing to our older boys, Michael and Ryan, and doing the chores. Still, it was exhausting.<\/p>\n
Before the boys were born, I\u2019d worked as a hospice nurse, but this was stress I\u2019d never experienced before. Some weeks Matthew barely grew at all, or worse, lost weight. Those were the times I felt most alone. Wasn\u2019t I doing enough? What more could I do?<\/p>\n
At six months Matthew weighed 12 pounds, eight ounces. The doctors were cautiously encouraged. We\u2019d reached a milestone. He was ready for his second operation in early 2009.<\/p>\n
The phone rang a few days before the surgery. \u201cHi, my name\u2019s Erica,\u201d the caller said. \u201cMy daughter Faith was born with a heart defect and, well, our doctor suggested I call you since your son will be going through the same surgery.\u201d<\/p>\n
She gave me advice on what to bring to the hospital and where to stay. What I appreciated even more was talking to a mother who knew what I was going through.<\/p>\n
Erica was my connection to this world I was now a part of yet understood so little about. I\u2019d never known how common congenital heart defects were.<\/p>\n
I hoped Matthew and Faith would have playdates, become friends as they grew older. But it wasn\u2019t to be. Faith died just months after her second birthday.<\/p>\n
Now in my study at my computer I thought of how much each moment with Faith had meant to my friend Erica, how much each day meant to a parent of a child with a heart defect.<\/p>\n
And these Facebook posts, from families left to wonder what might have been. They had never seen that first smile, fed their sweet babies their first bite of rice cereal. For want of a simple test.<\/p>\n
I knew what I had to do. I could see God\u2019s hand so clearly at work. He\u2019d given me Matthew. Now he was showing me a way to help give other children with heart defects a chance at life.<\/p>\n
I called the mom in Indiana who\u2019d gotten the law passed there requiring newborns to be tested for heart defects. She gave me tips on media coverage.<\/p>\n
\u201cJust tell your story,\u201d she said. \u201cBut it\u2019s not easy. You\u2019re going to need to tell it over and over.\u201d I researched who to contact at the Connecticut legislature and mailed letters.<\/p>\n
But I knew it had to be more than just my story. I wanted the law to be named in memory of Faith. A few weeks later I met with my state senator. He listened, nodding encouragingly.<\/p>\n
\u201cYou\u2019ve got my vote,\u201d he said. \u201cBut you need to understand. These things take time. First it has to go to committee and sometimes it takes years before they\u2019ll even hold a hearing.\u201d<\/p>\n