Gwendolyn
I am writing this letter in the hope that someday congenital heart defect research and education will receive the funding and attention they deserve.
I am the mother of a beautiful baby girl, Gwendolyn. Gwendolyn will be six months old June 12, 2009.
From the beginning we wanted everything for our daughter. My husband and I were thrilled to find out I was pregnant. Immediately, we began preparations for our first and only child. As a person who tends to be hyper vigilant, I did everything by the book: never missed a prenatal appointment, read all the books, stopped consuming anything that wasn’t approved, including my beloved coffee, I even held my breath when I walked past someone on the street that was smoking. My pregnancy progressed right on track. I never had any complications. I was never notified of any concerns by any of our prenatal caregivers. We even had four sonograms throughout the pregnancy in an attempt primarily to find out the sex of our child. I was confident, perhaps overconfident, that our little one would be born perfectly healthy. The concerns I had focused on how we were going to navigate these new waters of balancing work and family. I had no concerns that our daughter would have health issues. Why would I? My husband and I have no family histories suggesting birth defects, we are both healthy, and all the prenatal care we got suggested the same.
Gwendolyn was born full term two days prior to my due date. I still remember our family doctor examining her at the time of her birth and reporting that she was “perfect.” During the course of our stay at the hospital we had no reason to suspect anything else. The last day of our hospital stay, our pediatrician reported that she had heard a heart murmur, but it was likely nothing to be concerned about. She reported that many children are born with a patent ductus arterious murmur because of the functionality between the heart and umbilical cord; once born this has to close. My husband is a nurse and this matched with his medical training. Again, we were so confident that no health concerns were likely and simply accepted this explanation as the predominately likely cause for the murmur and dismissed any other possibilities. Approximately two weeks later, we had a nurse out to the home to do a check up and she heard the murmur and was very concerned. She expressed that her son had been born with a congenital heart defect and we needed to follow up. We simply explained we’d been notified of it and were told it was an innocent murmur, but we’d bring it up to the doctor when we went in two days later for a well-check visit. Again, we assumed her life experience was tainting her perspective and assumed what we thought was a PDA murmur would close within the first month of life as our research had indicated. Two days later everything changed, we got a referral to our local children’s specialty hospital and after a grueling day of testing and five hours of waiting for an explanation, we learned that our “perfect” baby was born with a very large ventricular septal defect or “hole in her heart.” This hole was approximately one centimeter large-on a child who was two weeks old, this meant she had virtually no division in the lower two chambers of her heart.
We were stunned, shocked to the core. We spent the entire hour drive home both in tears. Even now, thinking of that day makes me well up. The initial thought process for me went something like this: “why us?” “why her?” “why do we know so many people who have perfectly healthy babies?” “why do we know so many people who are not careful in their prenatal care who still have perfectly healthy babies?” “how could this have happened?” “what did we do?” “was there something we could have done to prevent this?” Like many people I thought this would never happen to me. I thought these kinds of things only happened to people who did copious amounts of irresponsible behaviors during or prior to pregnancy. Our daughter was born into a stable married relationship of over 5 years. My husband and I own our home and have for 5 years. My husband is a nurse, and I am a lawyer. We are both in our later 20’s. We do not smoke, drink only occasionally, and I have never in my life even tried an illegal drug substance. How could our little one be born with a defect? To this day, about five and one half months later, I still do not have an explanation. As far as I can tell, the research indicates the cause of congenital heart defects (CHD) is presently unknown. Yet it is the number 1 birth defect. To me there is something that does not match there-if it is so prevalent, more needs to be done by way of research to learn about it and treat it. During my prenatal care, I was tested for numerous things that were less likely to occur like spineabifita and down syndrome (both less likely defects than CHD), yet I was never tested or notified of a concern that regarding CHD.
From the date of diagnosis December 30, 2008 to May 5, 2009, we struggled to keep Gwendolyn healthy. We cancelled our plans of taking her to the hospital daycare and employed an in-home nanny. We had to give her high calorie formula and feed her constantly. We basically had to force feed her on occasion to get her to take in enough calories to gain weight. Her heart condition caused her heart to re-pump “bad” blood, causing an overload of her lungs. She breathed almost twice as fast as she should and her lungs were filled with extra fluid. Her body was using calories at a very high rate trying to keep up with the issues caused by the defect. We were informed that without adequate weight gain she could suffer brain damage from inadequate amounts of calories necessary for maturation, among other problems. It was a daily concern.
May 5, 2009, Gwendolyn had open heart surgery to correct her defect. She did a “hybrid” procedure whereby the surgeons opened her chest and stuck a catheter straight into the side of her heart, deployed a closure device through the catheter and put that device in place to close the hole in the lower chambers of her heart. This allowed them to close the defect without putting her on by-pass which is a more standard procedure. This “hybrid” method is relatively new and we had some concerns due to the fact that it is not a “time tested method” but those concerns were not outweighed by the risks associated with by-pass. Four days later she was discharged and doing well presently.
Gwen will always be a “heart kid.” She will always have to be vigilant about her health. She will always have a one centimeter piece of metal in her heart. We will always be wondering if the other shoe is going to drop. But, we are truly fortunate. Through this experience we have met so many others less fortunate. People who have to watch their little ones suffer through multiple heart surgeries or fight for years…..and people who have lost their babies. People who have given up everything to pay medical costs or to stay at home with a sick baby. People who have done nothing irresponsible prior to having that baby and suffer just the same.
More needs to be done. CHD’s are the number one, most common birth defect to occur, yet get very little public attention. There is very little education. The public needs to be educated that CHD are not the results of irresponsible behavior on the part of the parents-they can happen to anyone. CHD do not just happen to children of parents who did not take care of them in-utero or to children born prematurely. Most of the parents we have met were very similar to us-stable, married, employed, drug-free. Those myths need to be dispelled. Additionally, more research needs to be done to try to determine the cause of CHDs and treat them as early as possible and develop the least invasive treatments possible with the least risks. Presently, open heart surgery with by-pass is often the only treatment option available and the procedure itself is invasive and carries several risks. While it is possible to detect certain CHD’s during prenatal care, current standards and requirements for detection, particularly through sonograms, are absolutely minimal and inadequate. More can and should be done. This letter is sent with the hope that through the stories of others like Gwendolyn we can achieve a brighter future for CHD children.
Jennifer E. Klever-Kirkman