CARING FOR BABY AT HOME
What special/specific medical care is needed at home after the Norwood (first surgery)?
The baby's heart is working very hard after the first surgery. The right side is doing the work of the right AND left sides. Their oxygen levels will also be much lower than normal. Because of this, babies are very fragile between the first and second surgeries. They get tired very easily, sometimes have trouble eating, and are susceptible to illnesses.
Illnesses: It is highly recommended to keep the baby away from sick people, and to avoid large crowds to avoid any illnesses at that time. LOTS of hand washing is also a good idea for you, and definitely for anyone who holds the baby (remember that people can be sick and contagious before they show any signs.) These precautions are especially important if the baby is born during flu season. Ask your doctor if your baby should get the vaccine for RSV a respiratory virus that can be serious or fatal in premature infants, and those with heart problems.
Feeding: Because the baby's heart is working so hard, many babies have trouble breastfeeding or taking a bottle. While the baby is recovering from surgery, the baby will not have anything orally for a period of time, so the baby also needs to learn how to suck and swallow properly. Some babies do just fine and pick it up right away. Some babies take longer. Some do not have the energy required for feeding, and may tire out before getting enough calories. In this case, a feeding tube is used, to help the baby get the necessary nutrition. The hospital staff will help you with all of this, so don't panic. The most important thing to keep in mind is getting the baby big and strong for the next surgery regardless of how that nutrition needs to get there. Regular weight checks will help to monitor to see if the baby is getting enough calories.
Medications: Most babies come home from the Norwood on several medications. Make sure you understand what each medication is for, and how often it is to be given. The medications are usually in liquid form and are squirted into the mouth with a syringe. Also, make sure you double-check the concentration of medications. If a medication is made twice as strong (not as diluted) you would only give half as much.) Just make sure that the concentration on the medication matches that on the prescription since mistakes do occasionally happen.
Oxygen: Since babies' oxygen levels are lower after the Norwood, they are sometimes sent home on oxygen. Ask the surgeon if this is typical, or under what circumstances this would occur. If flying home from the Norwood, it may be a good idea to request oxygen for the flight. You need to arrange this with the airlines ahead of time.
Resources: There are many services to help you once you bring your baby home, so don't get overwhelmed by all of this information. You will have plenty of time in the hospital to learn anything that you need to to care for your baby. You cardiologist's office, the surgeon's office and your pediatrician will be great resources of information and help. You can also ask about a Home Health Nurse to come to your home and help you with any medical needs. Babies sometimes have physical delays due to recovering from the surgeries, but can catch up quickly with the right help. Early Intervention programs (usually through an agency called the Regional Center) can come to your house and evaluate the baby for any delays and then start a program of physical and/or occupational therapy (for feeding), if needed. Early Intervention is a FREE program that can greatly help your child with delays if any are present. It is best to schedule an evaluation prior to the second surgery to get your child in the system and check for any delays. If no delays are found at that point, you can have the baby re-evaluated after the second surgery. Starting therapy as soon as possible can greatly improve the baby's delays, and many children catch up by the 3rd surgery or soon after. (Note: most doctors will think you are nuts to have the baby evaluated so early but from personal experience, delays CAN be found this early and the sooner they are found, the sooner the baby can receive treatment. Remember that each doctor specializes in a certain area, and they may not focus on the child's physical development like physical or occupational therapists do.)
Can we put the baby in Day Care after the Norwood?
Because of all of the care required (see previous question), and the baby's increased susceptibility to illnesses after the Norwood, it is not a good idea to have the baby in a group day care setting. It is best to have one caretaker in the home to avoid exposing the child to illnesses. Even illnesses that show up as minor colds in other children can have a devastating effect on a baby after the Norwood. If you hire someone to care for the baby, make sure they understand how to administer medications, feed the baby appropriately, watch for signs and symptoms of any problems, and when to call the doctor. The baby is in a very fragile state after the Norwood since the baby's right side of the heart is doing all of the work of the entire heart. Once the second surgery is complete, some of that workload is reduced.
We have a trip planned for shortly after the baby's birth. Can we still go?
There are many unknowns until the baby is born and has the surgery. It is impossible to know how long the baby will need to be in the hospital, if he will require extra care or precautions, etc. Limiting exposure to large groups of people is very important, so avoiding airports and large crowds is helpful in maintaining the child's health. Traveling with a baby who is recovering from the Norwood surgery requires diligence in administering medications, maintaining a feeding schedule, in addition to any other requirements the baby has. While we all want to show off our newborn to family and friends, it is sometimes better to wait until after the second surgery when the baby is more stabile to travel. Ask the surgeon about the type of trip you have planned to see if it is realistic.
What restrictions will the child have in the long term?
Of course, this depends upon the child and how well he or she does with the surgeries. Ask your surgeon about any restrictions children may have after a heart transplant. Those undergoing the 3-stage surgeries are usually told to limit exposure to high altitudes (especially prior to the 3rd surgery.) They may also be told that competitive sports, and long distance running would not be recommended for the child, but that the child will be able to "self limit" his or her activities. Basically, the child is only limited to what he feels he can handle. Keep in mind that there are children and young adults with HLHS who have undergone the 3-stage surgeries who are very active in gymnastics, tennis and other sports. We only have a short history of survivors with HLHS since the life saving surgeries were only begun about 20 years ago, and at that time, the 3-stage surgeries were done completely differently. Some of those survivors are doing very well and are very active. It is hard to compare our children's future with teens or young adults with HLHS who had the surgeries long ago. But, we believe that children today have an even better chance of doing well thanks to all of the medical and surgical advances that have occurred during the last 20 years.