To introduce myself, I am a pediatrician in private practice in the Philadelphia suburbs. I have been in private practice for over six years. Prior to that, I completed my residency training at the Children’s Hospital of Philadelphia. My experience with children with congenital heart disease has come from both caring for patients in the hospital as well as in the out-patient setting.
Awaiting the arrival of a new baby is such an exciting and scary time for any family but even more so for parents of children with heart disease. Not only do you have to research a pediatrician for your newborn, but you have to select a cardiologist, cardiac surgeon, birth hospital, etc. It only made sense that the Sisters by Heart website wanted to offer expecting parents some advice when selecting a pediatrician and I was so pleased when they asked me to weigh in.
While you will be spending a lot of time with the cardiology staff, your general pediatrician will also play an important role in your child’s care. Your pediatrician should be familiar with complex congenital heart disease from diagnosis to post-op care to long-term follow-up. You should ask where your pediatrician trained, as certain medical centers specialize in cardiac care. He or she should be board-certified in pediatrics which means they trained at an accredited pediatrics program, passed the board exam and maintain educational requirements and quality improvement projects. In a busy pediatric office, your pediatrician should allow extra time for your child’s visit, including special attention that should be paid to growth and development. You will have lots of questions (and you should never be afraid to ask a question!) and you want to make sure your doctor has the time to answer them all. Your doctor should also stay updated on your child’s specialty care and have a contact through the medical center to remain informed.
Finally, you should ask how you can contact your pediatrician as concerns arise both when the office is open and after-hours. Your pediatrician should respond to your questions the same day and you should be familiar with the other providers (and they should be familiar with your child’s care) in the practice for when your pediatrician is not in the office. You should have easy access to a physician after-hours as well for emergencies.
The rest of the staff including the front desk staff, the nurses and the billers all play a role in your child’s care as well. The front desk staff should be aware that your child has complex needs - they may schedule appointments when the office is less busy or have your child brought back to an exam room immediately so your child is exposed to less illness in the waiting room.
The nursing staff who are answering questions on the phones during office hours should also know that your child has heart disease. For example, the nurses may give different advice about a cough or a fever for a patient with complex medical needs. The nurses should be knowledgeable about your child’s medications as they will often be refilling them. Your child likely will need many referrals for specialty care which the nurses or a referral coordinator will help you with.
The billing staff will be crucial to help you navigate insurance issues as they arise. Certain states provide supplemental insurance for children with complex health needs and your pediatrician’s office should be familiar with those options and accept those insurances.
My final thoughts involve the importance of vaccination for all children, but especially those with chronic medical conditions. Children with heart disease are particularly vulnerable to complications of many illnesses and we need to protect them as much as possible.
Illnesses that attack your child’s lungs require special attention for children with heart disease. While influenza (“the flu”) may just cause fevers, body aches, and a lingering cough in some children, a child with heart disease could end up in the intensive care unit from the same illness. Your pediatrician’s office should have a system in place to prioritize your child (and his or her siblings) to receive the flu vaccine as soon as it becomes available.
Respiratory Syncytial Virus (or RSV) can also be devastating to certain groups of children like those with heart disease or infants that were born premature. Unfortunately, no vaccine provides long-term immunity against this illness. Children who are at highest risk are recommended to receive monthly injections of antibodies to protect against this illness during the peak season – typically from October to early Spring. Again, your pediatrician’s office should coordinate this for you. Please make sure you have a contact person in the office to assist in insurance coverage for this very expensive immunization and to assist in setting up your monthly visits to receive the injection.
You have probably heard that pertussis (or whooping cough) has been making a comeback recently. This past year has seen a significant rise in the number of cases due to a number of factors including groups of families who chose not to immunize their children and adults losing the protection of the vaccines they received as children. Please make sure your pediatrician is up-to-date on the latest recommendations on immunizations from the American Academy of Pediatrics, as changes can come up.
Please also insure that any person that has frequent contact with your child also has received his or her vaccines – like the flu and whooping cough (Tdap or DTap) – including you, grandparents, daycare providers and even the staff that works at your pediatrician’s office. It is also wise to ask about your pediatrician’s office policy on vaccination. Recently, more offices are asking families that chose not to vaccinate their children to find another provider. This is primarily to protect other children in the office. While no vaccine provides 100% protection, you want to assure that the other patients in the waiting room are fully vaccinated so diseases like the flu, whooping cough, and measles are not spread by visiting your doctor.
While there is so much to think about, always remember your child is a blessing and will provide you with countless joy. Good luck!
Jennifer Melnychuk, MD ("Dr. Jen")
All Star Pediatrics
Thank you Dr. Jen for sharing your experience in treating complex cardiac patients and offering your insights into caring for them. We, at Sisters by Heart, greatly appreciate your time and contribution to educating our HLHS families on the importance of vaccinations and guidance on choosing the right Pediatrician for their child. We know our families will be equally as appreciative for your time and expertise!
Helpful Tip: Most Pediatric offices will allow expecting parents to set up an appointment with one of their Pediatricians to give them an opportunity to ask questions and find out more about the practice. Here is a list of questions from the JCCHD Parent Page (suggested by HLHS parents) you can ask when meeting with a Pediatrician. As Dr. Jen mentioned above, your child's Pediatrician is an integral part of his or her care team - it's important that the docs and office staff accommodate your needs, especially during interstage. If they are not willing to do so, you may want to keep looking!