Resources on Premature Babies

Caring for Preemies

Caring for Preemies

Learn, grow, share: it's all about educating and supporting premature infants and their families. Here are some resources that offer you the information you need to make informed decisions about your preemie’s treatment and care.
Helpful Resources Available for Download.

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Connections

Preemie Support Connections

Connect with other preemie advocates.
View Connections.

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Advocacy Resource Guide

Premature Infant Advocacy Resource Guide

Learn more about preterm birth and become an effective preemie advocate with our resource guide. Go to the Resource Guide.

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regional Advocacy Networks

Regional Advocacy Networks

Bringing together interested parties focuses on the health and well-being of premature babies. View Networks.

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Articles & Reports

Advocating for Baby

Talking to health professionals can be intimidating, even for parents with healthcare backgrounds.

Below are suggestions that will help you get the most out of your appointments and develop mutually respectful relationships with your child’s health and wellness team.

  • When you book an appointment, be clear about what your concern is. If you have more than one issue that you would like addressed, be sure to specify this, to ensure that the appropriate time is scheduled.
  • Be prepared. Arrive at the appointment with all of the information that you think will be required. Bring a list of current medications, as well as vitamins and natural remedies, that your child is taking. If you are seeing a specialist, make sure you have all of the related details with you. Write information down if you think you’ll forget.
  • Prioritize your concerns. State what these are at the beginning of your appointment, so that you and your health practitioner can organize your time. Start with the toughest issues, and you’ll feel better once they have been given a voice.
  • Be brief, very specific, and factual in your description of the problem. Busy health professionals must quickly arrive at conclusions, and you want these conclusions to be based on the facts that are most important. Come to the appointment with details, and offer them without being asked.

To learn more about advocating for your child, click here.

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Late-Preterm Babies Needing ICU Catch Up with Other Preemies

The need for neonatal intensive care may not make a difference in long-term prospects for babies born late in the preterm period, according to new research.

At 3 years, children who were born between 34 and 36 weeks' gestation who required neonatal intensive care showed no differences in thinking, physical or language development skills compared to children born late preterm who received regular newborn nursery care, researchers found.

To read the full article, click here.

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Understanding Your Preemie's Special Needs

If your baby is born too early, the miracle of birth might be overshadowed by concern about your preemie's health and the possible long-term effects of prematurity. However, there's much you can do to take care of your premature baby — and yourself — as you look toward the future.

Your preemie's special challenges

A premature or preterm baby is born before 37 weeks of pregnancy have been completed. Generally, the earlier a baby is born, the higher the risk of complications.

At first, your premature baby might have little body fat and need help maintaining body heat. He or she might cry only softly and have trouble breathing. Feeding your preemie might be a challenge. Yellowing of the skin and eyes (jaundice), low blood sugar, and lack of red blood cells to carry oxygen to your baby's tissues (anemia) are possible.

More-serious concerns might include infection, episodes of stopped breathing (apnea) and bleeding into the brain. Some preemies have impaired hearing or vision. Others experience developmental delays, learning disabilities, motor deficits, or behavioral, psychological or chronic health problems. Many, however, catch up and experience normal healthy development.

To read more click here.

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What you can expect from your Preemie's Continuing Medical Care Plan

Having a premature baby can feel like you’re walking around in a maze, trying to figure out what comes next and what you will be faced with in the years to come. Premature babies are those born prior to 36 weeks gestation. These tiny miracles face somewhat uncertain futures, depending on the gestation they were born at and the problems they battled while in the NICU. According to preemiehelp.com, over 13 million babies are born prematurely each year. The good news for most preemie parents is that your child’s chance of survival has greatly increased in the past thirty years. With the medical advances, about 90 percent of premature babies will survive, that is an increase of over 60 percent, from the survival rate of just 25 percent thirty years ago.

To learn more about these common health problems as your preemie develops click here.

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Caring for Your Preemie

Your preterm baby has special needs. We've got the information you need to help your baby through these early weeks and months. When will Baby come home from the hospital? How can you help him once he's home? Learn the basics of caring for your preemie here.

To review the basics click here.

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Strategy Confirmed to Help Doctors Determine When to Treat Retinopathy of Prematurity

Scientists have shown that through an eye exam, doctors can identify infants who are most likely to benefit from early treatment for a potentially blinding eye condition called retinopathy of prematurity (ROP), resulting in better vision for many children.

These long-term results of the Early Treatment for Retinopathy of Prematurity (ETROP) study confirm that the visual benefit of early treatment for selected infants continues through 6 years of age. The research, published April 12 online in Archives of Ophthalmology, was supported by the National Eye Institute (NEI), part of the National Institutes of Health.

To learn more about this study and the benefits of an early eye exam on premature infants, click here

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Antioxidant Shown to Reduce Blindness Risk in Extremely Premature Babies

Retinopathy of prematurity (ROP) is the second most common cause of childhood blindness in the United States, occurring in half of premature infants born earlier than or at 28 weeks gestational age. The condition is caused by abnormal blood vessel development in the retina of the eye. ROP risk increases with decreasing gestational age.

To learn more about this cause of childhood blindness and preventative research, click here.

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Retinopathy of Prematurity

Retinopathy of Prematurity (ROP) is an abnormal blood vessel development in the retina of the eye common in premature infants. Because the blood vessels of the retina begin to develop 3 months after conception and are complete at the time of normal full term birth, eye development in infants born prematurely can be severely disrupted. The vessels may stop growing or grow abnormally from the retina into the normally clear gel that fills the back of the eye. These vessels are fragile and can leak, causing bleeding in the eye.

As a result, scar tissue may develop and pull the retina loose from the inner surface of the eye. In severe cases, this can result in vision loss.

In the past, routine use of excess oxygen to treat premature babies stimulated abnormal vessel growth. Currently, oxygen can be easily and accurately monitored, so this problem is rare.

Today, the risk of developing ROP depends on the degree of prematurity. Generally, the smallest and sickest premature babies have the highest risk.

Typically all babies younger than 30 weeks gestation or weighing fewer than 3 pounds at birth are screened for the condition. Certain high-risk babies who weigh 3 - 4.5 pounds or who are born after 30 weeks should also be screened.

Unfortunately one familiar name associated with ROP blindness is Stevie Wonder. He was born two months early in 1950.

To learn more about ROP in a premature infant, along with symptoms, treatments and prognosis, visit: http://www.nlm.nih.gov/medlineplus/ency/article/001618.htm and http://musicandliving.com/stevie-wonder-the-cause-of-his-blindness.html

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What Is Respiratory Distress Syndrome?

Respiratory distress syndrome (RDS) is a breathing disorder that affects newborns. The disorder is more common in premature infants born about 6 weeks or more before their due dates.

RDS can affect premature infants because their lungs aren't able to make enough surfactant (sur-FAK-tant). Surfactant is a liquid that coats the inside of the lungs. It helps keep them open so that infants can breathe in air once they're born.

Without enough surfactant, the lungs collapse and the infant has to work hard to breathe. He or she might not be able to breathe in enough oxygen to support the body's organs. The lack of oxygen can damage the baby's brain and other organs if proper treatment isn't given.

Most babies who develop RDS show signs of breathing problems and a lack of oxygen at birth or within the first few hours that follow.

To get more information click here.

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Respiratory Distress Syndrome (RDS)

Neonatal respiratory distress syndrome (RDS) occurs in infants whose lungs have not fully developed. The disease is mainly caused by a lack of a slippery, protective substance called surfactant, which helps the lungs inflate with air and keeps the air sacs from collapsing. This substance normally appears in fully developed lungs. Neonatal RDS can also be the result of genetic problems with lung development.

The earlier a baby is born, the higher the chance of neonatal RDS. Most cases are seen in babies born before 28 weeks.

RDS was once known as hyaline membrane disease (HMD). It remains one of the most common afflictions in premature babies, whose undeveloped lungs are unable to function optimally. Typically the condition worsens over the first two to three days but usually improves with treatment. In August 1963, the younger son of President and Mrs. Kennedy died of Respiratory Distress Syndrome (RDS). Patrick Bouvier Kennedy, who was born 5½ weeks prematurely and weighed only 4 pounds, 10½ ounces, lived for less than two days. Because his lungs were not fully developed, breathing for him, was a hopeless struggle.

Unfortunately, the loss experienced by the Kennedys was shared by many other families at that time. During the early 60s, about 25,000 American babies developed RDS each year and 10,000 of them died.

If you’d like to learn more about Patrick Kennedy’s story and RDS click here.

The impact of preterm birth impacts the family for a lifetime, by Maureen Boyle

Like every parent of a preemie I never planned or expected to be one. Lots of pregnancies are planned, which is a REALLY good thing, but none with the hope or intention of an NICU (Neonatal Intensive Care Unit) experience. This seems like a pretty obvious thing to say but you may be surprised how many people lose sight of this. Once pregnant, some women find out that they are in a high risk pregnancy and then are given the opportunity (if you want to call it that) to prepare, as best as anyone can, for a possible early delivery. Many other couples are blindsided by an abrupt end to a somewhat typical pregnancy experience. To read the full article, click here.

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Useful Information
See Our Advocacy Resource Guide View Tips on Caring for Preemies Sign up for email alerts Join an advocacy network near you
PreemieVoices on Flickr