A baby is similar to a flower–tiny and delicate. It requires gentle and loving care, especially if the baby is born with a heart ailment. This is known as congenital heart disease as it is present from the time of birth. A combined effort by medical specialists and love, care, and support of the parents is vital if the baby is born with a heart that does not function properly. With the passage of time, the management of congenital heart disease has drastically improved, letting many affected children grow into healthy adults.
According to statistics, 4-9 per 1,000 full-term live born infants suffer from congenital heart disease. Each year 1.5 million new cases occur. It is perhaps one of the most commonly diagnosed congenital conditions prevalent among newborns. Some congenital heart diseases are mild and may not require immediate treatment, however, serious cases need immediate medical treatment.
Understanding congenital heart diseases
Congenital heart diseases could be simple or complex in nature. Some examples of simple defects may be hole in the heart or defective valves. Due to a hole in the heart, oxygen-rich blood mixes with deoxygenated blood. A defective heart valve may interfere with the blood supply reaching various parts of the body. On the other hand, a complex heart defect may be a mix of a simple defect, combined with abnormal connections of blood vessels to and from the heart, or it can be a major defect in the heart’s structure.
The diagnosis of congenital heart disease can be done before birth, right after birth, or even when the child becomes an adult. Most of the babies do not show any symptoms at all. Some medical tests may be done by a qualified pediatric cardiologist to learn about the kind of congenital heart disease affecting your baby. The condition of your baby’s heart can also be assessed with the help of these tests.
- Electrocardiogram or ECG: This test measures the activity of various parts of your baby’s heart. It also shows how different parts of the heart are functioning.
- Pulse Oximetry: Measures the amount of oxygen present in your baby’s blood.
- Echocardiogram: Sound images of your baby’s heart can be obtained through an electrocardiogram.
- Chest X-ray: This gives a detailed information as to how well your baby’s heart is growing and if any fluid is present in the lungs.
- Cardiac catheterization: In this, a dye is used which can show clearly the heart problem that your baby has.
Babies may be affected by one or several congenital heart diseases at the same time. Depending upon the type of disease, the treatment can be given. These are generally treated by one of the following methods:
- Medicines: These act by reducing the stress on the heart.
- Surgery: Sometimes, a baby may be required to undergo one or several types of surgeries over a period of few months or years in order to repair the heart structures. This may be done immediately after birth or after sometime.
- Cardiac catheterization: A hole in the heart can be treated in this way by closing the hole with balloons inserted at the time of cardiac catheterization.
- Ablation: Defects of the heart rhythms can be rectified by inserting tubes. Sometimes, small sections of the heart that cause problem can be destroyed with the help of radiofrequency energy or extreme cold.
- Heart transplant: This is the last treatment option one can resort to when all other methods fail.
Normal development of your baby through proper care
Owing to the heart problem your baby has, normal development may be hampered but there is a fair likelihood of your baby achieving developmental milestones such as crawling, talking, walking, and playing on time, just like other children do. Once the heart problem is rectified, your baby can grow to be strong and healthy.
While caring for your baby who is suffering from a congenital heart disease, it is important to understand the basics about the disease, medicines that can be used to treat it, dietary needs of the child, keeping an eye out for signs and symptoms, and encourage the child to self-manage the condition which will make him or her more positive and confident.
Be not afraid, you will not hurt your baby
Many parents become over cautious and fear they would hurt their sick baby while handling them. Your baby needs your love and care. So, despite your baby being sick, you wouldn’t be causing any hurt by cuddling or caring for the baby. It is important to spend time with your baby in activities such as talking and praying. Your baby requires the same attention as any other normal baby.
Feeding your baby
Because of heart disease, babies may become tired easily. If your baby becomes too tired to be fed at one go, then feed the baby in small portions as often as possible. The heart defect makes your baby’s heart to become exhausted soon and it is unable to meet your baby’s increased needs for extra energy. Feeding your baby in small amounts at frequent intervals will not tire out your baby.
Breast milk is the ideal food for your baby which also provides protection against infections. It may not be easy to breastfeed your baby for long as the child may become tired but to prevent any infections from occurring which could worsen the baby’s condition, it is important to make breastfeeding essential. For extra calorie requirement of the baby, you may give baby formula food. In case of any problems while breastfeeding, it is advisable to consult your doctor who may recommend a lactation specialist.
If you have to complement breastfeeding with special baby food formula, it is best to take the advice of a nutritionist or pediatric dietician who can advise you of the right formula for your baby.
Do not be overprotective
Being too overprotective of your child will alienate and isolate the child and hamper in his or her normal development in the long-run.
Once the child grows older, it is important to inform them about their health condition as an infant, the need for medications, why regular visits to the doctor is required, and why they need to be treated. Encourage your child to get involved in physical activities along with other children after getting relevant advice from the doctor.
Seeking help
You can seek help from various sources such as a doctor or a hospital regarding the kind of treatment options available. In this regard, even social workers and counsellors can help by providing information about the respite programs and home care services to help you in caring for your baby.
You can also seek the help and support of parental support groups and share your journey’s experience with other parents facing similar problems.
