Infants are referred to the American SIDS Institute by their primary care physician (pediatrician or family practitioner). The Institute’s services involve assessing the infant’s likelihood of having a life threatening episode during infancy and providing infant monitoring services for infants placed on home monitors.

Among those infants referred to the institute are:

1. Infants who have been observed to stop breathing.

2. Infants who are siblings of babies who have died of SIDS.

3. Premature infants who have breathing problems or who are very tiny.

4. Infants who stop breathing after spitting up.

5. Infants whose mothers used drugs during pregnancy.

6. Infants born to teen mothers who have already had one or more babies.

Our program involves the following components:

1. Institute Assessment. The assessment, which can be done within a few days of birth, involves

• A questionnaire and interview to obtain medical information about the baby and the mother.
• A sleep study (polysomnogram).
• A feeding study.

The study helps determine the baby's ability to control heart rate and breathing during feeding and during different stages of sleep. Study results along with other data are used to predict how likely the infant is to have a life threatening event during infancy.

The laboratory study is painless and is performed without sedatives. For young infants it takes about 3 - 4 hours and is usually done during a daytime nap. For older infants the study is performed overnight. Parents can wait in our family lounge, where they can read, nap or watch videos. They are also free to go into the lab at any time and view their infant.

2. An orientation. This is a phone session conducted by our nurse or other clinical staff immediately before or after the infant has been set up on a monitor. (If the parent prefers, this can be done at the Institute.) It covers:

• Why home monitoring is used.

• What various alarms mean.

• Keeping records.

• When the monitor should be used.

• How and when to modem the monitor data to the Institute.

• The responsibilities of the family.

• The role of the equipment company. The pediatrician. The Institute.

• Who to call and when.

• How families can adjust to home monitoring.

• Answering parents' questions.

• The sleep and feeding study conducted at the Institute.
  

3. Twenty-four hour help. On-call staff is available around the clock to answer any of the parents’ or physician’s concerns or questions.
   
   

4. Analysis of the monitor data. The Institute will download the data from the monitor, and our physician will analyze the data and provide a report to the infant’s pediatrician. Clinic professionals call the parents and discuss the results. We download:

• Within two days of monitor setup.

• Anytime there is an alarm that concerns the parent (day or night).

• At least every two weeks.

5. Phone consults. Clinic staff phones the family at least once per month and

• Reviews monitor protocol and use.

• Discusses the infant's progress, including download results and laboratory results.

• Assesses family's adjustment to the monitor.

• Answers any questions family may have.

6. Discontinuation preparation. The institute's physician helps the pediatrician decide when it is time to take the baby off the monitor. When that time comes, clinic staff will discuss the criteria used in their recommendation. We will also help prepare parents for living without the monitor.

   Our main goal at the American SIDS Institute's Clinic is to help the pediatrician manage the infant safely and effectively. We also want to help parents provide appropriate home care for their baby. No one is more important to us at the Institute than the babies for whom we provide care.

    

    

All of the infants in these pictures were patients in our clinic.
We would like to thank their parents for letting us display their pictures.

Home | Mission | Board | Staff | Definition of SIDS | Incidence | Risk factor | Preventive Measure | Memorial
Articles | Future research | Featured Question | Calendar of Events | Clinical activities