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The role of the pediatric cardiac clinic has evolved with the advancement of medical technology over the last few years to include a different kind of patient in the pediatric cardiac clinic: the fetal patient. Expectant mothers are screened at area clinics for risk factors for delivering a baby with a congenital heart defect and referred to the pediatric cardiac clinic for additional testing and treatment. Some risk factors include alcohol or drug exposure including chemotherapy, gestational diabetes, genetics and consanguinity. A team of experts and support staff are assembled and available to the cardiac fetal parents to assist them with their unexpected journey. Preparations are made in advance of the delivery of the cardiac newborn which improve the infants' outcome after delivery. Expectant mothers are referred to our clinic by Obstetricians in the community that have a suspicion for an abnormal fetal ultrasound or that have risk factors that could cause a congenital cardiac defect in the fetus. Women at high risk for fetal cardiac defects such as mothers of advanced maternal age, gestational diabetes and family history of cardiac defects are screened by fetal echocardiography so that the family and cardiac team can identify the heart defect and prepare for the delivery and treatment of the newborn. The fetal echocardiogram is painless and non-invasive and gives detailed images of the fetal heart. The fetal echocardiogram is done by highly specialized sonographers that use a wand-like camera over the mother's abdomen to obtain detailed images of the fetal heart in approximately one hour. The fetal echo is read immediately by the Echo cardiologist and results are discussed with the family. With the assistance of an Advanced Registered Nurse Practitioner, the cardiologist explains the normal fetal heart anatomy and function and then reviews the diagnosed fetal heart defect with the family including options for treatment, including palliative care if necessary. This is all done in the first visit to the Pediatric Heart Institute. One in 100 newborns are born in the United States with a congenital heart defect. It can be frightening to learn your child has a congenital heart defect. The Pediatric Heart Institute at Joe DiMaggio Children's Hospital has developed a personalized notebook for the fetal cardiac patients. Learning about a child's congenital heart defect is an ongoing process that continues throughout the patient's lifetime. The notebooks are put together by the staff and are meant to assist our patients on the journey from diagnosis through their surgeries and maintenance care. Every child is different and every heart condition has its own unique plan so the notebooks are a means for the families to educate themselves, access resources, file cardiac catheterization reports and surgical reports, track growth and nutrition and have their contacts at their fingertips. The notebook is brought to each visit at the Pediatric Heart Station to be updated and can be taken on trips with the patient so that the entire cardiac history of the patient is on hand in case of an emergency. The notebook has input from all of the services involved in the patient's care including dietary, physical therapy, surgical team, and cardiology support staff. The introduction section of the notebook is written to the fetal patient and family and includes answers to common questions that are often asked by the parents such as where the delivery will take place, whether the baby can be delivered by cesarean section or lady partslly, what to expect at the delivery and when the baby can be held and fed. An introduction and tour are given to the fetal parents of the Neonatal Intensive Care Unit and of the Pediatric Cardiac Intensive Care Unit. This tour is given as the parents get closer to the delivery date and after a delivery plan has been developed by the obstetrician and the fetal echo cardiologist. The tour is done by the fetal coordinator in conjunction with the Advance Registered Nurse Practitioner. Introductions are made with all of the cardiac team that will soon be involved in the care of the newborn congenital heart patient including social workers, psychologists, nutritionists, child life therapists and pediatric cardiac nurses. With each subsequent visit to the Pediatric Heart Station as a fetal patient the family is expected to bring the notebook so that the information can be updated and kept current. Once the baby is born the notebook becomes even more valuable to the family as it becomes more of a workbook that is used frequently for the services that are involved in the infant's care. Growth and nutrition is one particular section where the families can record daily weights, concentration, volume and frequency of feeds and any feeding issues the infant may have. The daily record in the cardiac notebook can then be referred to at office visits or via telephone with the practitioners. The feedback we have received from our families has been extremely positive regarding the functionality and usefulness of the cardiac notebook. We have added a section including a place to take notes with a yearlong calendar so the patients can keep track of their appointments. We have also added a section for medications including color coding for patients and families that are illiterate. Each cardiac notebook is personalized according to the patient's diagnosis, level of ability and plan of care. We have seen that the families feel more in control of their clinic visits and are better informed regarding the complex diagnosis of congenital heart defect. Our plan for the future is to download all of the information to a thumb drive for the patients who have access to a computer and are computer literate. The memory stick is much more portable and can be updated more quickly. We will continue to evaluate and adjust as technology advances and hope to further improve the quality of the care we deliver in the Pediatric Heart Institute at Joe DiMaggio Children's Hospital.

Sentiments run high regarding the Affordable Care Act, but whether one supports the new law or believes it to be a case of government over-reach, the fact is that the ACA is now the law and as nurses, we are obligated to make sure that patients and their families understand the basic workings of the law. Nurses are in a position of trust and as such we should be able to address patient's questions and concerns regardless of our personal feelings about the ACA. Open enrollment began on October 1, 2013 and there is still much confusion and disinformation as to what the law does and does not cover. If we are to be a resource for our patients and their families we must educate ourselves so that we don't contribute to the confusion. Paying for medical and drug bills is the most common financial problem Americans report having; even more than missed mortgage payments, job loss and home foreclosure. There are millions of people anxious to get insurance or find less expensive insurance and many patients and their families may look to their nurses for answers to questions about how to enroll, how much it will cost and what will be covered. While we may not become experts in the new law, we can certainly make every effort to become as knowledgeable as possible so that we do not misinform or misdirect those who place their trust in us. Major changes in the healthcare landscape already took place in March of 2010 when the ACA was signed into law: Children are now able to remain on their parent's health care policies until they are age 26.Children with pre-existing conditions are now covered.There are no lifetime limits on coverage.Preventive care is now free for seniors on Medicare and for people with health insurance.Prescription drugs are discounted for seniors.Insurance companies are required to spend at least 80% of their premium charges on medical care.After January 2014, no one will be denied health insurance because of a pre-existing condition and all insurance plans will be required to offer the following benefits: Emergency servicesHospitalizationPrescription drugsLaboratory servicesPediatric servicesMaternity and newborn carePreventive and wellness servicesAmbulatory patient servicesMental health and substance abuse servicesRehabilitative services and devicesHealth insurance exchanges, also known as marketplaces offer several levels of coverage: Platinum - Patient pays the highest premium and about 10% of costsGold - Patient pays about 20% of costsSilver - Patient pays about 30% of costsBronze - Patient pays the lowest premium, but about 40% of out of pocket expenses through co-pays and deductibles.ACA Myths and Facts: Myth: Insurance will be free Fact: Insurance plans will cost money, however many uninsured will be eligible for Medicaid or receive subsidies to buy insurance from an exchange. Some people will pay the entire amount themselves but will be able to choose from different price ranges and plans. Myth: There is one government plan that everyone must enroll in. Insurance will be offered by both for profit and non-profit companies. Medicaid will be expanded to cover those making up to 138% of the poverty level for a family of four ($33,000 annually for a family of four). Family size: You may be able to get financial assistance if income is below: 1 family member $46,000 2 family members $62,000 3 family members $78,100 4 family members $94,200 5 family members $110,300 6 family members $126,400 Myth: Health choices will be restricted. Fact: Health choices for previously uninsured people will be considerably expanded. The ACA allows people to get insurance through Medicaid or buy it on exchanges giving them access to a greater variety of healthcare providers and services. Myth: Medicare premiums will go up. Fact: Medicare premiums will not go up under the ACA, however, Medicare recipients will now receive drug discounts and free preventative care. Myth: Healthcare premiums will go up on individual plans. Fact: Persons with pre-existing conditions, women and older people are more likely to see their premiums go down. Co-pays and deductibles may also decrease and limits on how much insurance companies will pay for care will be eliminated. Several studies on insurance premiums expect that more people will pay less (than they did prior to the reforms) than those who will pay more and that those premiums will be more stable and transparent due to the regulations on insurance. It is estimated that about half the people who currently buy insurance on their own today will be eligible for subsidies. Myth: Everyone's premiums will go down under the ACA. Fact: For a healthy young person who has a low cost, high deductible policy the premiums will likely go up, but the coverage will be better. Those making less than $45,000 annually will probably be eligible for a subsidy. Myth: People with health insurance now will lose it next year. Fact: Individual and employer sponsored insurance will probably not change any more than it usually does from year to year. Some people may lose coverage because a few insurers choose not to participate in the exchanges or because some of the low cost, high deductible plans now available don't provide the essential health benefits required by the ACA will be discontinued. Myth: People who don't buy health insurance will go to jail. Fact: The penalty for not buying insurance will be $95 per adult, $47.50 per child, and $285 or 1% of household income, (whichever is greater) for families in 2014. In 2015 these penalties will increase to $325 per adult, $162.50 per child, (up to $975 per family) or 2.5% of income for families. People without insurance can sign up for a plan anytime between October 1, 2013 and March 31, 2014, to be covered in 2014. For those who sign up by December 23, coverage will start on January 1, 2014. People under 30 and those with low incomes who cannot get other types of insurance may choose a catastrophic plan. These catastrophic plans cost less than other plans, but require patients to pay all health costs except preventative services up to a certain amount, (usually thousands of dollars) after which the insurance company usually will cover the 10 basic services (see above). Subsidies may not be applied toward catastrophic plans. Twenty-two states and the District of Columbia have expanded their Medicaid programs meaning those making up to 138% of poverty level (about $33,000 for a family of four) will be eligible for Medicaid. Those in other states who do not qualify for subsidies are exempt from fines for not having insurance. See websites below for state by state details. Sixteen states and the District of Columbia are operating their own exchanges, seven have created exchanges in partnership with the federal government and the rest are letting the federal government run the exchange. In all states, people making up to $45,000 ($94,000 for a family of four) may qualify for subsidies to help pay for health insurance. Enrollment dates: If you buy insurance by -- Insurance begins: 12/15/2013 -- 1/1/2014 1/15/2014 -- 2/1/2014 2/15/2014 -- 3/1/2014 3/15/2014 -- 4/1/2014 3/31/2014 -- 5/1/2014 In subsequent years enrollment will run from Oct 15 thru Dec 7. These waiting periods mean people won't be able to just wait and buy insurance only when they become ill or have an accident. Persons seeking health insurance or information about the ACA can go to Healthcare.gov where they will find a list of insurance companies and they may begin the application process for insurance. It is also possible to enroll by telephone at 800-318-2596 or in person at a certified enrollment location such as a hospital or community center, which may be desirable alternatives as the government website has been experiencing technical difficulties. Kaiser Family Foundation: KFF.org/Health-reform and WebMD.com/Health-Insurance provide tools to input one's income and get an estimate of what subsidies might be available and how much one might expect to pay for health insurance on the exchanges based on the state in which you reside. You can find more information at the following websites: Whitehouse.gov/healthreformMarketplace.CMS.govHHS.gov/healthcare/rights/Healthlawanswers.aarp.orgWebMD.com/Health-InsurancePolitico.com/obamacare-guide