Kelly Wittich – Why We Need More CHD Research
Kelly Wittich manages a not-for-profit church health plan and previously practiced adult physical therapy in a hospital setting. She leverages her hospital and health benefits expertise both on a personal level in fighting her daughter's CHD and as a board member of the Illinois Chapter of the Children's Heart Foundation.
My pregnancy with our first child was uneventful; in my 38th week, my OB joked that my entire prenatal history could fit on a half-sheet of paper. Then our daughter was born— perfect and seemingly healthy. She had a heart murmur, but we were told that many murmurs just disappear in time. No one mentioned the possibility that she could be born with the most common birth defect—a congenital heart defect (CHD).
When she was four days old, her pediatrician said she’d feel better if we got a quick echocardiogram to check out that murmur; hopefully, it was nothing. At the time, I still believed that could be true.
That hope vanished when we learned that our sweet baby girl was indeed born with a CHD—her defect was considered critical. We were sent immediately to the children’s hospital ICU. We were told that without treatment, her heart would suddenly become overworked and stop beating, and she would die.
I had all of the recommended prenatal care and hold two advanced degrees in health-related fields, yet I knew nothing about CHD before it happened to us. Most of our family and friends knew nothing of CHD until they joined us on our journey. Not many people have an understanding of CHDs and even fewer understand how important it is to fund life-saving CHD research. Given the sheer number of people and families impacted by CHD, I'd like to see a lot more funding dedicated to CHD research.
At eight days old, our tiny, less than 8-pound baby girl had a cardiac catheterization. Waiting for that to be completed was terrifying, but it was nothing compared with the next two weeks—infected clots on the tissue-paper-thin valves in her tiny newborn heart led to an emergency resuscitation and open-heart surgery at 19 days old.
Our next seven weeks were filled with ventilators, an external heart/lung machine (ECMO), dialysis, antibiotics, central lines, blood thinners, bleeds, clots and feeding tubes. They said she was at “high risk for mortality.” I hardly ever went home during that time, but when I did, I could barely look at her room, clothes, toys and crib — not knowing if she would be home to use them again.
Months later, when things were relatively stable — and by stable, I mean waiting for her next open-heart surgery, giving her daily medications and injections, and feeding her through a tube in her nose — I came across The Children’s Heart Foundation (CHF).
Since its inception over 20 years ago, the CHF has been dedicated to funding the most promising research to advance the diagnosis, prevention and treatment of CHD. I met others who were also desperate for answers that may improve the long-term outcome and life expectancy of our kids and found CHF was the perfect place to channel my desire to do something to help my daughter. I joined the board of the foundation’s Illinois Chapter, started a team for the Chicago Congenital Heart Walk and started raising funds and raising awareness among anyone who would listen.
We still have battles to face, and there is so much still unknown about how to treat CHDs. I am haunted by the reality that her surgeries are far from a cure — there are inevitable liver and kidney complications that come from her Fontan physiology. Experts don’t know exactly why the altered pressures cause damage to the organs, and they certainly don’t know how to prevent it.
The Children’s Heart Foundation and American Heart Association are trying to fill that knowledge gap. As a parent reviewer of research grants, I have sat at my computer with tears streaming down my face in hope and excitement about some of the research for which funding has been requested. Then I have redoubled my fundraising efforts, hoping we can fund as many of those promising projects as possible and knowing that so many will go unfunded each year. I feel desperate for more answers—answers that mean that complications and deaths can be avoided. Our kids and our families deserve better and only research will get us there.
My daughter has already had more than her share of complications from her CHD. Someday, I know she will face complications that experts don’t know how to treat. Well-intentioned people tell me that “everything will be ok” because medical science is advancing so quickly. But that is only true if there is adequate funding to support research. I want them to find the answers that my daughter needs to survive and thrive well into adulthood. I want her to be able to have kids and grandkids — and right now that is far from a certainty.
Most parents will tell you that if you like to be in control—having kids will take that away from you. Having a child with a CHD takes even more. So much of our lives, our routine, our hopes for a healthy child have been handed over to CHD. But it’s also incredibly hopeful to be able to make a difference in my daughter’s future by funding more CHD research through The Children’s Heart Foundation and American Heart Association. I feel like we are funding the miracles of tomorrow—and I want those miracles, for my daughter and all of the kids like her.
Anyone can support The CHF and AHA’s Congenital Heart Defect Research Awards by giving to the Hope and Jack Fund. Named in honor of two children living with hypoplastic left heart syndrome, this fund directly supports important CHD research.