A Grieving Mom’s Plea: Consider Participating in Research
Today, January 8, my son Adam would have turned 4.
I can picture him tearing through the house in a Batman cape, wearing out the batteries on the new fire truck he would have gotten for his birthday. Or maybe I’d have spent half the day wiping a red, runny nose and rubbing cold little fingers after Adam spent hours outside, breaking in his new sled and making snowmen in the front yard.
Instead, my husband and I will mark our son’s birthday at Resurrection Cemetery, where we’ll brush away the snow and place a colorful pinwheel on our baby boy’s grave.
For parents who have lost a child, birthdays are bittersweet days of mixed emotions. Celebration and sorrow. Life and loss.
But this year, there is hope cutting through our sadness. I recently learned of research under way at the University of Wisconsin that aims for earlier detection and treatment of the devastating condition that took Adam from us.
Necrotizing enterocolitis (NEC) primarily affects premature babies like Adam, resulting in the death of intestinal tissue. The cause of NEC is unknown, but one theory is that the intestinal tissues of premature infants are weakened by too little oxygen or blood flow. NEC moves quickly, and by the time it’s detected, dangerous microbes have often times grown out of control and already caused irreparable harm to the bowel.
That was the case for Adam, who was born three months early, weighing just under two pounds – small but mighty. When Adam was born, my husband Jeff and I certainly knew we had a rough road ahead of us. But he had done so well and fought so hard in his first weeks in the NICU that we allowed ourselves to be optimistic about one day bringing Adam home.
Then, seemingly out of nowhere, his condition dangerously deteriorated. And in the middle of the night on Feb. 3, 2009, we kissed our beautiful, brave little Adam goodbye and he died in our arms.
It’s stories like ours that keep Douglas Weibel up at night, wondering how to catch NEC earlier, at a point when something can be done to stop it. In Weibel’s lab at UW-Madison, he and fellow scientists are working to engineer a portable, inexpensive device that they hope will one day be used to test for NEC’s biomarker – allowing doctors to treat it before it’s too late.
Fellow researcher Katie Brenner says NEC is so devastating – for babies and their doctors alike – because its onset and course are so unpredictable.
“I was talking with a neonatologist last week, and he expressed how NEC is heartbreaking for him, too,” she told me. “It renders him, as a physician, powerless. There isn’t much doctors can do about it except to watch, wait, hope and pray that precious, tiny people like Adam don’t begin to show signs of it.”
In Weibel and Brenner’s research, finding the critical NEC biomarker involves collecting urine samples from the diapers of premature babies in the NICU. It’s work that may one day save the lives of countless premature babies everywhere, as well as in the NICU that’s being built right here at American Family Children’s Hospital.
But Brenner says one of the hurdles the researchers face is finding parents who are willing to allow their babies’ diapers to be tested. Quite understandably, many parents fear the label of “clinical research,” even when what needs to be done is completely non-invasive.
As a parent, I can certainly empathize. No parent wants their child to be a “guinea pig.” But without clinical research, we can’t make things better. We can’t advance and find new and better ways to treat or even cure conditions that harm or even kill – whether it’s necrotizing enterocolitis or the common cold.
As parents, we’re sometimes asked to consider enrolling our children in clinical studies. Perhaps your child wheezes and you’ve received a letter to enroll in a UW Health asthma study. Or maybe your child had an ear infection and you were asked to participate in a study testing the efficacy of different courses of antibiotics.
From one parent to another, I urge you to please give it some serious thought if you’re presented with an opportunity to participate in research studies. If you’re open to it, you might just help people like Douglas Weibel and Katie Brenner come up with a novel way to save a child’s life.
For as long as I live, and with each year and every birthday that passes, I will forever wonder who Adam would have become. I’ll never know the answer. But it is extremely heartening to know that people like Katie and Doug are investigating innovative ways to prevent such loss of life and potential, and such heartbreak for families.
The photo above shows my son in his isolette in the NICU with Stripes the Tiger, the Beanie Baby who kept Adam company for the 25 days of his short life. We buried Adam with his buddy Stripes, because we couldn’t bear the thought of our sweet little boy being alone.
It seemed so fitting that Stripes was a tiger, because Adam seemed to fight so fiercely, no matter what obstacle was thrown in his path. But ultimately, NEC was just too big of a monster to be defeated.
As strong as he was, Adam couldn’t do it alone. My hope is that Katie and Doug’s research will help babies like Adam fend off this monster. From the bottom of my heart, I thank them for their dedication and vision.
And from the bottom of my heart, I’m also tremendously grateful to parents willing to help fulfill the vision of all researchers who are working hard to advance health care for our children.