If you have a child with a congenital heart defect, here’s what you should expect from your pediatrician

Parents of a child with a chronic illness can expect to attend numerous doctor’s appointments throughout their child’s formative years. You have specialists and consultants and surgeons and therapists; it can become a full-time job keeping up with this complex web of moving parts.

You probably also know that congenital heart disease (CHD) affects more than a child’s heart. CHD has far-reaching effects that extend throughout a child’s life and the life of the family.

Recognizing these challenges, how do you ensure that each of your child’s needs are being met: physical, mental, emotional and social? How do you ensure that each specialty, therapy and resource is coordinated and communicating with one another?

In other words, how do you make sure that nothing is slipping through the cracks?

Your pediatric medical home can help

Your pediatrician is what we in the medical world refer to as your primary care provider or PCP. It’s your home base for all things related to your kid’s health. While the pediatrician’s office doesn’t provide every service your child will need, it’s usually your first stop in figuring out which specialist or service can address a particular issue.

Your pediatrician should be more than the person you see when your kid has a cold or needs a vaccine. For the most successful outcome for your child with CHD, parents and pediatricians must function as long-term partners in their child’s health. Your pediatrician should be your advocate, your educator, your connection to necessary resources, your support and your partner in decision-making and problem-solving.

Every good partnership is built upon a mutual understanding of what each partner can expect from the other, so as you begin or continue this relationship with your child’s primary care provider it’s important to know what you can reasonably expect from him or her at different stages of your child’s life.

Here is what the American Academy of Pediatrics (AAP) says your pediatrician should be offering to you in the ongoing care of your child.

Before birth and after birth in the hospital

Many babies are diagnosed with CHD prior to birth around 18 to 22 weeks’ gestation. If you have received a prenatal diagnosis, it’s important to establish a relationship with a primary care provider even before the baby is born. While the cardiac specialist will be your primary source of information for cardiac issues, your pediatrician will also become a valuable resource. 

Seeking support

Your pediatrician can help you get connected to support groups in your area. Often if they have families within their practice who are open to it, they may introduce you to other families in similar circumstances who can offer guidance or support to you. 

Getting connected

Your pediatrician can also provide referrals to other specialists or subspecialists your child may need. Anticipating these needs and getting connected before the baby is born is ideal. Ask what services you’re likely to need in the first year and establish a relationship if you can.

In-hospital care

While in the hospital, your newborn is evaluated either by your pediatrician or a pediatric hospitalist charged with your baby’s care. Newborns should be evaluated by their doctor to determine if they have abnormalities within their heart that weren’t detected prenatally, and it’s recommended that they undergo pulse oximetry measurement (a way to see how much oxygen is in their blood) to help detect heart problems. Every baby born at Winnie Palmer Hospital for Women and Babies receives a pulse oximetry measurement 24 hours after birth.

Genetic testing and counseling

Many cardiac issues have known genetic causes or associations. Along with your cardiac specialist, your pediatrician may assist in referring you to a genetic counselor for genetic testing.

The newborn period after coming home from the hospital

Medical record keeping

When your child comes home from the hospital, it is imperative that your pediatrician receives detailed information about your child’s hospital stay. Your pediatrician should seek relevant medical records from the specialists involved in your child’s care as well so he or she is fully aware of the plan of care for your child.

Coordination of multiple areas of care

 Your pediatrician will play a central role in coordinating the care from each of the different doctors who treat your child and should be sure that each piece of the puzzle fits together as a whole.  

Feeding schedule and medication regimens

When your child is discharged from the hospital, you should be given detailed instructions regarding the medications he is to receive at home and how he should receive them. Some children will need to take blood thinners, which can mean you have to give injections or follow up often with testing. If you don’t understand these directions or have trouble implementing them, your pediatrician should help you develop a daily routine of care.

Growth and development and feeding difficulties

One of the primary concerns for your baby will be nutrition and growth. Talk to your pediatrician about the appropriate feeding regimen for your child. If you encounter difficulties in feeding, your pediatrician is your first resource. He or she will monitor your child’s growth to be sure he is growing appropriately and address issues if they arise.

Preventing illness

Children with CHD often have a lowered ability to resist and fight infections and may require certain precautions to prevent illness. Your pediatrician will let you know what precautions are recommended. Vaccines will play a critical role in helping keep your child healthy, and your pediatrician will administer vaccines at the age-appropriate time for the specific needs of your child. 

Join us for Part 2 of this series when we discuss what you should expect from your pediatrician throughout childhood and adolescence.