This is Chloe-cakes at 4 months old recovering from her Arterial Switch Operation.

Heart defects come in all types, from minor to major. Defects can occur inside the heart or in the large blood vessels outside the heart. The heart defect may need immediate surgery or may be able to safely wait for months or years. In most cases, the timing of the surgery will depend on how sick the baby is.

The heart defect may be repaired in a single surgical procedure or may require a series of procedures. Surgery may involve opening the heart to repair defects or repairing defects of the blood vessels.

The type and timing of surgical repair depends on the child’s condition and the type and severity of heart defects. In general, symptoms that indicate that surgery is needed include the following:

  • Blue or gray skin, lips, and nail beds (cyanosis), meaning there is not enough oxygen in the blood (hypoxia)
  • Difficulty breathing because the lungs are “wet,” congested, or fluid-filled (congestive heart failure)
  • Problems with heart rate or rhythm (arrhythmias)
  • Excessive workload on heart that interferes with breathing, feeding, or sleeping
  • Poor weight gain and difficulty feeding (taking too long for your child to eat, not eating at all)

You’ve been told your baby needs open heart surgery. Knowing what to expect before and after your baby’s operation will make the experience easier for the whole family.

Chances are your newborn is in the intensive care unit, or NICU. This is also where most of your infant’s pre- and post-operative care will take place. To reduce the risk of infection, hospitals often restrict visitation to parents only. You should wash your hands before holding your baby, and avoid close contact if you are sick. An older child will likely be taken care of in a pediatric intensive care unit (PICU) after surgery.

Many parents say the hardest part is saying goodbye to their babies as they are wheeled off to surgery. Feelings of fear, sadness and guilt are common. Talking to a nurse or social worker about these emotions can help you deal with all the stress and anxiety.

In the operating room –

During open heart surgery, an incision may be made through the breastbone (sternum) and between the lungs (mediastinum) while the child is under general anesthesia. For some heart defect repairs, the incision is made on the side of the chest, between the ribs (thoracotomy) instead of through the breastbone (sternotomy).

It is sometimes necessary to use tubes to re-route the blood through a special pump (heart-lung bypass machine) that adds oxygen to the blood and keeps it warm and moving through the rest of the body while the repair is being done. This machine does the work of the heart and lungs during the operation.

Heart surgery for children requires a specialized team of health care providers:

  • Pediatric heart (cardiovascular) surgeons
  • Pediatric anesthesiologists
  • Pediatric heart-lung (cardiopulmonary) bypass pump technologists
  • Pediatric surgical nurses and technicians
  • Pediatric intensive care physicians and nurses

Heart surgery requires intensive and extensive monitoring, treatment and coordination by the entire team. Heart surgery for children may take as many as 12 hours in the operating room.

Recovery –

After heart surgery, the child will be moved to the neonatal or pediatric intensive care unit (NICU/PICU) to be constantly and closely monitored and treated for several days. When you are reunited with your child, the tubes and equipment you’ll see around your child’s body can look scary. Your baby may still have IV lines in place for fluids and medications, be on a ventilator to help with breathing and have chest tubes to drain blood and fluid. Some babies may need extra oxygen, which is given under a clear plastic tent. During this time, your child may have the following:

  • An Endotracheal Tube is usually inserted through the mouth, into the windpipe or trachea, to provide an airway. It will be taped over the child’s nose and mouth.
  • Your child will also be on a respirator to help with breathing. This is a mechanical device that ventilates the child by providing air to and from the lungs while removing carbon dioxide from the body. Your child will be kept sleeping (sedated) while on the respirator.
  • One or more Central IV lines placed in a vein that leads to the right atrium. Their purpose is to monitor central heart pressures and give fluids and medications.
  • An Arterial Line, which is a small tube in an artery (one of the vessels that pulsate) to measure the blood pressure and oxygen levels.
  • One or two Chest Tubes which are placed into the space between the chest wall and the lung, called Pleural Space. These are placed after heart surgery to prevent accumulation of body fluids. The chest tubes drain air, blood, and fluid from the chest cavity. This drainage should diminish in amount daily.
  • A Nasogastric Tube (NG tube) to empty the stomach and give medications and/or feedings for several days.
  • A Foley Catheter, which is a tube placed in the bladder to drain and measure the urine for several days. It is held in place by a small balloon, which is inflated in the bladder after insertion.
  • Oxygen may be needed after surgery. It can be delivered by room air, through the ET Tube, through a mask or through a tube called a nasal cannula.
  • Your child will be monitored with a Pulse Oximeter. It is a noninvasive sensor that is clipped to yourchild’s finger, ear or toe to monitor blood oxygen levels.
  • There will also be other heart monitoring equipment near the bedside in the room. Leads will be placed on your child’s chest to monitor heart rythmn, heart rate, respiratory rate and any central line pressure readings.

Your child may also have pacemaker wires in the chest in case a pacemaker is needed to regulate heartbeat and rhythm.

Your baby will be sedated and sleepy for a while after surgery. The length of the hospital stay will depend on what type of surgery was performed and how quickly your baby recovers. It may take a few days or a few weeks.

Going home –

When your baby can go home, you’ll have to be careful to avoid exposure to illness. That means you may need to stay inside the house for a while with limited amount of visitors. Your baby may also have to take many medicines at different times of day. A chart with a dosing schedule can help you keep track. The doctors will provide other instructions on how to care for your baby, like keeping the incision clean. They’ll also show you the safest way to pick up your infant after surgery.

It’s hard for parents to see their children go through something like surgery, even when it’s so important for their health. Knowing what to expect in advance can make the experience a little easier to bear.

Please feel free to contact me if you have any specific questions about our personal experience with Chloe’s NICU stay after birth, NG tube, medications, home oxygen and PulseOx Monitor, cardiac catheterization, balloon atrial septostomy, open heart surgery or Gtube/fundo procedure.