The heart is responsible for circulating blood throughout the body via pulmonary and systemic circulation. At times, the heart develops in utero with deformities, or congenital heart defects, preventing sufficient blood flow from either the right or left side of the heart, or possibly even both. This happens an average of 8/1000 live births (Jayaprasad, 2016). Other times, there may be cardiomyopathies, which is disease of the heart muscle, that cause there to be diminished blood flow.
Heart failure in children can present at any time, but while prognosis in children is usually better than in adults, the time of onset plays a role in diagnosis and treatment. The two most common methods of treatment fit into the two broad categories of pharmacologic therapy and device therapy.
The pharmaceuticals commonly used are diuretics, digoxin, beta blockers, and ACE inhibitors. A trial conducted in 1993 including children from infancy through age of 18 and various defects. This trial tested the difference between treating with ACE inhibitors, specifically carvedilol, compared to digoxin and diuretics (Das, 2018). Despite being the first and only randomized, controlled study in pediatric heart failure, there were no benefits shown in the treatment (Das, 2018).
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The study did, however, highlight some difficulties to be overcome with future trials, such as difficulties in interpreting data from a large, diverse population (Das, 2018). A retrospective study conducted in 2010, containing 80 children, discovered that there is benefit to treating with ACE inhibitors in dilated cardiomyopathy versus no treatment, and use of digoxin with diuretics showed similar results (Das, 2018).
ACE inhibitor treatment is widely accepted, and is encouraged by the International Society for Heart and Lung Transplantation (ISHLT) to treat heart failure (level of evidence B) (Das, 2018). Despite these and other studies, there is no definitive conclusion as to whether or not these medications consistently benefit the patients. There are no gold standard trials that have been done in the pediatric sector, so physicians are relying on past experiences for future treatments.
The other frequently used treatment method utilizes device therapy, or mechanical circulatory support. Extracorporeal membrane oxygenation (ECMO), which delivers complete cardiopulmonary support, is frequently used for end stage heart failure while waiting for a heart transplant (Jayaprasad, 2016). However, poor post-transplant survival has been linked to ECMO use (Das, 2018). In 2011, a study consisting of 48 pediatric patient younger than 16 was done comparing the use of ECMO and the Berlin Heart EXCOR, which is an extracorporeal device designed in Germany specifically for pediatric patients (Hyotala, 2018).
The 48 patients were divided into two groups based on body surface area. EXCOR enabled the patients to survive markedly longer than those who were on ECMO (174 and 144 days vs 13 and 10 days, approximately) (Hyotala, 2018). A more recent study in 2015 showed the majority of patients who used EXCOR were able to be weaned from the support or used the device until successful transplant (Hyotala, 2018). There are six different sizes of the EXCOR, allowing it to be utilized in patients as small as 3kg, but due to the lack of portable outpatient power supply, patients must stay in the hospital while waiting for a transplant (Hyotala, 2018).
Patients using these methods require palliative care encompassing vitals, monitoring anxiety level, explaining to the patient and family what is happening and why, what further options they have, and what the prognosis might be. There is question as to the morality of conducting clinical trials on children, however more concrete information and evidence is necessary to successfully treat the patients. We cannot in good conscience continue treating children as small adults, because there are a great many differences between the two. It is reassuring to know that the similarities that there are do allow for more educated guessing in treatment since there is a lack of EBP data. The knowledge learned in this research will allow me to assist in caring for pediatric heart failure patients, but has made me aware of the deficient knowledge in EBP treatment.
