Learning About Severe Aortic Valve Stenosis in Newborns

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What is aortic valve stenosis?

Image of fetal heart circulation

Aortic valve stenosis is a type of congenital heart defect. Congenital heart defects are heart problems a baby is born with. These heart problems are usually diagnosed at or before birth.

"Aortic" refers to the aorta, one of the two main arteries attached to the heart. The aorta sends oxygen-rich blood (red blood) out to the body. The aortic valve is the gate through which the heart pumps blood into the aorta."Stenosis" means "narrowed."

In aortic valve stenosis, that gate is too narrow. The heart has to work harder to push blood through it. So the baby's body gets some oxygen but not enough. And over time, this can weaken the heart.

A baby with aortic valve stenosis may also have other heart defects.

Your baby may need special care, such as being in the neonatal intensive care unit (NICU). This may be scary for you. The hospital staff understands this. They will explain what happens and will answer your questions.

How is aortic valve stenosis diagnosed?

Your doctor may hear abnormal heart sounds, such as a heart murmur, when he or she examines your newborn.

Your doctor will order tests to find the cause of abnormal sounds or of symptoms. The most common test used to identify this defect is called an echocardiogram, or "echo" for short. It uses sound waves to make an image of your baby's heart.

Your baby may have other tests, such as an ECG or EKG (electrocardiogram), chest X-ray, and checking the amount of oxygen in the blood.

A fetal ultrasound, which lets your doctor see an image of your baby before birth, sometimes finds this defect.

What are the symptoms?

Symptoms depend on how much narrowing there is in the valve. If there is only a little narrowing, there may be no symptoms.

When the narrowing is more serious, symptoms may include:

  • A blue tint to the skin, lips, and fingernails.
  • Fast breathing.
  • Sweating while feeding.
  • Not eating well.
  • Being fussy a lot of the time.

How it is treated?

Your doctor will help you understand your baby's condition, your treatment choices, and what to expect from each choice.

Your doctor may use a procedure called a balloon angioplasty to stretch the valve so that it is more open. Your baby will be asleep during this procedure. The doctor puts a thin tube into a blood vessel. This may be a blood vessel in your baby's groin. Or it may be one of the vessels in the belly button.

The tube is called a catheter. It contains a tiny uninflated balloon. The doctor moves the catheter through the blood vessel to the heart. The doctor feeds the balloon into the valve and then inflates it for a short time to stretch open the valve.

Your baby may need open-heart surgery to repair or replace the valve.

What can you expect?

  • You may see tubes and wires attached to your baby. This can be scary to see. But these things help the doctor treat your baby. The tubes supply air, fluid, and medicines to your baby. The wires are attached to machines that help the doctor keep track of your baby's vital signs. These include temperature, blood pressure, breathing rate, and pulse rate.
  • It may seem that your baby is getting lots of tests. All of these tests help your doctor keep track of your baby's condition and give the best treatment possible.
  • If your baby has trouble breathing, the doctor may use a ventilator. This machine helps your baby breathe. To use the machine, the doctor puts a soft tube through your baby's mouth into the windpipe.
  • The hospital staff will give your baby the nutrition he or she needs. The doctor may feed your baby through a soft tube that goes through the nose and into the stomach. Or the doctor may use an IV that goes through the belly button to do this.
  • After surgery, your baby will need routine checkups to check his or her heart. He or she may need more surgeries or procedures in the future.
  • It's hard to be apart from your baby, especially when you worry about his or her condition. Know that the hospital staff is well prepared to care for babies with this condition. They will do everything they can to help. If you need it, get support from friends and family. Ask the hospital staff about counselling and support.

Follow-up care is a key part of your child's treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse call line if your child is having problems. It's also a good idea to know your child's test results and keep a list of the medicines your child takes.

Where can you learn more?

Go to https://www.healthwise.net/patientEd

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