A baby is like a flower, so tiny, so delicate; it requires your tender and loving care, more so, if the baby is born with a heart problem. The baby is said to be having a congenital heart disease. With a heart that does not function properly, the baby needs medical care of the specialists, and love, care, and support of the parents, to cope with the condition. Over the years, the management of congenital heart disease has substantially improved, and as such many affected children grow to become healthy adults.
The incidence of congenital heart disease among the full term live born infants is 4 to 9 per 1,000. Each year 1.5 million new cases occur. It is one of the most commonly diagnosed congenital conditions among the newborn. Some congenital heart diseases may be mild and the treatment can wait, however, some are serious and immediate treatment may be required.
Babies may be born with a defect in heart, which could be simple defects or complex. Examples of simple defects are a hole in the heart or defect in the valves of the heart. A hole in the heart causes mixing of oxygen laden blood with the de-oxygenated blood. A defective heart valve may interfere with the blood supply to various parts of the body. A complex heart defect may involve a simple defect coupled with abnormal connections of the blood vessels from and to the heart, or a major defect in the structure of the heart.
Congenital heart disease can be diagnosed before birth, right after birth and even in adults. Most of the babies may not have symptoms at all. Many kinds of tests may be carried out by the qualified pediatric cardiologist to know as to what congenital heart disease your baby has. These tests also show the condition of your baby’s heart.
Electrocardiogram (ECG):Measures the activity of different parts of your baby’s heart. Also shows as to how various parts of the heart are working.
Pulse oximetry:Measures the amount of oxygen present in your baby’s blood.
Echocardiogram:Provides the doctor the sound images of your baby’s heart.
Chest X-ray:The doctor can evaluate as to how well your baby’s heart is growing and whether any fluid is present in the lungs.
Cardiac catheterization:A dye is used in the heart to know clearly about the heart problem your baby has.
Babies may have one or several congenital heart diseases, and the treatment depends on the type of disease. These are generally treated by one or more of the following ways:
Medicines:Medicines may be prescribed to reduce the stress on the heart.
Surgery:Some babies may need to undergo one or various types of surgeries. Some may need one or several over a period of months or years to repair heart structures. Some may need immediately as soon as they are born and some may need after sometime.
Cardiac catheterization:Some defects of the heart such as holes can be closed using catheters by inserting balloons.
Ablation:Some defects of the heart rhythms can be corrected by inserting tubes or small sections of heart causing problems can be destroyed using radiofrequency energy or intense cold.
Heart transplant:When there are no other treatment options, heart transplant may be considered as the last resort.
Because of the heart problem your baby has, the normal development may be hampered but there is a good chance for your baby to crawl, talk, walk and play normally like other children do. Once the heart problem is fixed, the chances for your baby to grow strong and healthy are good.
Caring for your baby with congenital heart disease includes understanding the basics about congenital heart disease, medicines to be used, nutrition to be provided, keeping an eye on the signs of trouble and encouraging the kid in self management which would make him or her more confident and positive.
Many parents are afraid that they would hurt their sick baby if they try to handle. Your baby needs your love and care. You do not hurt your baby if you cuddle and care even though your baby is sick. For you and your baby, talking and playing are very important. Your baby needs the same attention like that for any baby.
Because of heart disease, babies may become tired easily. If your baby becomes tired during feeding, then feed the baby in small portions as often as possible. The heart defect may make the heart of your baby exhausted and as such your baby needs extra energy to work harder. Feeding your baby in small amounts as many times as possible does not tire your baby.
Breastmilk is the best food for your baby and also protects your baby from any infections. Even though it may not be easy to breastfeed because your baby may become tired, to prevent any infection that could worsen your baby’s condition, breastfeeding is essential. You may need to give baby formula food for extra calories required by your baby. If you are facing any problems regarding breastfeeding, you need to consult your doctor who may recommend you to a specialist in lactation. If you have to feed your baby with special baby food formula or need to use it along with your breast milk, a nutritionist or pediatric dietician can advise you of the right formula for your baby.
Help your child to lead a normal life and do not try to be over protective as this might isolate and alienate your baby which may hamper normal development in the long-run.
Older kids need to be informed as to what happened to them when they were infants, why medicines need to be taken, why to visit the doctor regularly and why they need to be treated. Encourage your kid to become involved in physical activities with other children and obtain relevant advise from your doctor.
You can seek help from various sources such as your doctor or hospital about the kinds of care they can offer. You may also approach social workers or counselors to know more about the respite programs and home care services to cope up with caring of your baby.
You can also obtain required help and support from parental support groups and share what you are going through with parents facing similar problems.