News Moms Need

Chris and Vince Centofanti thought they knew all about preterm birth. She was a neonatal nurse-practitioner caring for critically ill babies, and he worked for GE Healthcare’s Maternal-Infant Care division, providing specialized medical equipment to hospitals. But then their own baby, Nina, was born nine weeks early, weighing less than three pounds.  She suffered from respiratory distress and spent her first five weeks fighting for life in a newborn intensive care unit (NICU).

“I can’t tell you how difficult it was, seeing our own little girl lying in the NICU, fighting for life. All our hopes and dreams for her hung in the balance,” says Chris Centofanti.  “As a nurse-practitioner I’ve seen many other parents in this situation, and now I know exactly how they feel.” “I never expected that my own daughter would have to be cared for in a NICU with the equipment I had provided to the hospital,” says Vince Centofanti.

While pregnant with Nina, Chris felt unwell at 31 weeks and went to the hospital. She was diagnosed with HELLP Syndrome, a form of high blood pressure with elevated liver enzymes and a low blood platelet count. It is a rare, but potentially life-threatening illness that typically occurs late in pregnancy. The only treatment is to deliver the baby as soon as possible. For the next 48 hours, Chris was treated with steroids to help develop baby Nina’s lungs before birth. At birth, Nina was immediately transferred to the NICU, where she spent the next five weeks.

In addition to Nina, the Centofantis have an older son Nick, and a second daughter, Mia, who was born at 35 weeks of pregnancy, thanks in part to weekly progesterone treatments which reduced the risk of Chris going into premature labor. “Even though things didn’t go as planned, we’ve been blessed with three healthy children, thanks in large part to the work of the March of Dimes.  Just a few years ago, the outcome might be been very different,” says Chris.  She adds, “Thanks to the care that Nina received, and the support of the March of Dimes for research and treatment, now we also know the relief and joy parents feel when their child survives and becomes healthy enough to leave the NICU and go home.”

Today Nina Centofanti has grown into an active 7-year-old who loves to dance, climb trees and turn handsprings. She has been named the March of Dimes 2013 National Ambassador. As ambassador, Nina and her family will travel the United States visiting public officials and corporate sponsors, and encouraging people to participate in the March of Dimes’ largest fundraiser, March for Babies. The money raised supports community programs that help moms have healthy, full term pregnancies, and funds research to find answers to the problems that threaten babies’ lives.
 
“Serving as the National Ambassador family is a way for us to show our appreciation for our children’s good health, and serve as advocates for lifesaving March of Dimes programs,” says Vince.  “The March of Dimes has provided 75 years of support for research, treatments, educational and prenatal care programs that has saved lives, reduced the suffering, and improved the quality of life for countless children and the parents who love them. My daughter Nina is one of their success stories; a perfect example of what March of Dimes efforts have accomplished.”

Please join us Friday, November 9th, at 2 PM ET for a #preemiechat about micropreemies, babies born at less than 28 weeks and weighing less than 800 grams. Our guest will be Amanda Knickerbocker, @micropreemie, whose daughter spent over 200 days in the NICU.

Meet us on Twitter and share your experiences and challenges. Ask questions. Help other parents currently surviving the NICU rollercoaster with tips on things that really helped you survive those long days, weeks, months. We hope to see you then.

Some newborn intensive care units (NICUs) will encourage you to hold your baby from birth onward. Other NICUs will want you to wait until your baby’s health is stable. Ask your NICU staff about its policy on kangaroo care.

Kangaroo care is the practice of holding your diapered baby on your bare chest (if you’re the father) or between your breasts (if you’re the mother), with a blanket draped over your baby’s back. This skin-to-skin contact benefits both you and your baby.

You may be a little nervous about trying kangaroo care. If your baby is very small or sick, you may be afraid you’ll hurt him. But you won’t. Your baby knows your scent, touch and the rhythms of your speech and breathing, and he will enjoy feeling that closeness with you. Kangaroo care can help your baby:
• Maintain his body warmth
• Regulate his heart and breathing rates
• Gain weight
• Spend more time in deep sleep
• Spend more time being quiet and alert and less time crying
• Have a better chance of successful breastfeeding (kangaroo care can improve the mother’s breastmilk production)

Kangaroo care has emotional benefits for you, too. It builds your confidence as you provide intimate care that can improve your baby’s health and well being. You are giving something special to your baby that only you can give. By holding your baby skin-to-skin, you will feel the experience of new parenthood and closeness to your baby. Kangaroo care is healing in many ways, for both you and your baby.

Kangaroo care is safe and beneficial, even if your baby is connected to machines. Whatever your situation, kangaroo care is a precious way to be close to your baby. You will cherish this time.

Born at 31 weeks, weighing just 3lbs 1 oz, Kieran Wittstruck spent the first month of his life in a newborn intensive care unit. Now 5 years old, Kieran still flips expectations on their head. Outside his home near Seattle, he likes to ride his bike and swim. He also is a budding mechanical engineer and is always working on his next great invention. And if that wasn’t enough, he even runs his own cat spy agency: MEOWS!

TV Journalist and March of Dimes Volunteer Jane Clayson tells her story about the premature birth of her son William. William was born weighing only 2 pounds, thirteen ounces and spent three months in the Neonatal Intensive Care Unit. Thanks to his family’s support, advanced medical care and research the March of Dimes helped fund, young William, today, is a vibrant little boy.

When a baby is born early and is in the NICU, it’s usually because he needs to be closely monitored in a safe, protected environment so he can continue to develop like he would if he were still inside Mom. This can’t happen in the cute nursery waiting at home.

Since premature babies cannot regulate their body temperature well, they often are placed in a radiant warmer for a couple of days. This special open bed may not look like it will do much, but a special sensor taped to the baby’s skin keeps track of his temperature and adjusts the heat around him as needed. The openness of the bed allows easy access for medical attention during constant monitoring.

Once stabilized, babies usually are transferred to an isolette. This plexiglass box is an incubator that protects the baby from temperature fluctuations in the room. It has portholes on the sides for medical staff to reach through in order to provide different treatments, diaper changes, etc. One wall of the isolette can be unhinged to provide complete access to the baby. As in the radiant warmer, the temperature within the isolette is regulated in accordance with the baby’s temperature needs. Some isolettes also provide moist, humidified air to prevent the baby’s environment from becoming too dry.

Many parents of a baby in the NICU want to decorate their baby’s isolette, make it personal. In time, that will be a great idea, but in the beginning babies just can’t handle any extra stimulation. Very tiny babies may not even be able to handle being touched for the first week or so. It’s hard for parents to see their baby in such a sterile environment. Items such as a special isolette cover, a stuffed animal or family photo can provide a touch of home. By talking with the NICU staff caring for their baby, parents will learn when and how much of a personal touch will be best for their little one.

If you had a baby in the NICU, how long was it before you were able to personalize your baby’s bed?

Our Director of NICU Family Support shares a story about the power of reading to your baby, even if he is in a neonatal intensive care unit.

While working in the NICU, I had the privilege of knowing one particular family whose baby was born at twenty-eight weeks gestation.  This little boy was going through a particularly vulnerable and fragile time and staff had requested that handling be kept to a minimum.  Until he stabilized, his anxious parents were asked not to hold him.  Despite this distressing limitation, the baby’s father, an intense and intellectual man, found his own way to get close to his beloved son.  Early each morning before his job, this father would come in and tuck himself behind his growing son’s incubator.  And in deep, hushed tones, staff and families would hear this dad reading “The Adventures of Winnie the Pooh and Christopher Robin” to his baby boy through the incubator’s porthole window.

As staff, we began to depend on this father’s soothing voice of care in the early mornings.  Families approached me and asked me if I had books for them to read to their children.  I had an idea.  Inspired by this very father, I created the Bedside Reading Program, a rolling cart of children’s books in various languages, so that every family could read to their babies at the bedside.  It would be a way to bond, to parent and to get close despite all the barriers of the NICU.  The NICU became a library, where every parent was reading to his or her baby.

Recently I was able to get together with the family who inspired this program.  And today that little boy is eight years old and is reading to his father.

Now, through a generous in-kind sponsorship by Scholastic, Inc., we have a March of Dimes Bedside Reading Program in sixty-one of our March of Dimes NICU Family Support sites nationwide, at least one per state, Washington, D.C., and Puerto Rico.  In addition, enough books have been donated to provide Sibling Lending Libraries in the NICU and a book gift to every family at the end of their baby’s hospitalization.
 
If you would like to donate to the Bedside Reading Program or get involved with NICU Family Support in your state, please contact your local chapter of the March of Dimes. No matter how old your baby is, read to him often to help him develop. Reading is one of the most important things you can do with your child.

The wonderful DiscoveryHealth NICU series (Thursdays at 10 PM ET/PT) has brought to light the intensity and reality of the struggles premature babies and their families face.  But babies born full term can be in the NICU, too, especially if they are sick or have a birth defect and need specialized treatment.

Some babies are born with an abdominal wall defect such as gastroschisis or omphalocele. These often require surgery or staged repair over time.  Some babies have heart defects that also require monitoring or surgery.  Other babies may qualify as full term (over 37 completed weeks) but have failed to thrive and have a low birthweight.   Other conditions that might require a stay in the NICU  include: anemia (low number of red blood cells in the blood), apnea (breathing irregularity), bradycardia (abnormal slowing of the heart rate), bronchopulmonary dysplasia (a form of chronic lung disease), hydrocephalus (water on the brain), sepsis (infection that spreads throughout the body).

All of us with preemies are acutely aware of these intensive care services, but we need to realize that the wonderful staff of the NICU need to be prepared for any baby, any size, any gestational age, any complication.  Thank goodness they are there for all of us.

Most babies leave the neonatal intensive care unit (NICU) and grow into normal, healthy children. Some leave the NICU with temporary or chronic medical conditions that may require special attention from their parents or care givers.

When a NICU baby is better and stronger, he will graduate from the NICU. That means he is:
• Probably breathing on his own
• Possibly starting to feed from the breast or bottle
• Gaining weight
• Getting stronger

This little guy is almost ready to go home—but not quite. He is now ready to move to the “step-down” or intermediate-care nursery for some additional recovery time. The step-down nursery may be in the same hospital as the NICU, although not every NICU has one. Sometimes babies are transferred to a community hospital closer to home.  That process is often referred to as back-transport.  The baby’s doctors will discuss any transfer plans with his parents in advance. If they and the baby’s doctors decide this is right for him, the baby probably will be moved in an ambulance.  It may take a few days for the baby to adjust to a transfer.

Although parents are happy their baby is getting better, they may be more than a little nervous about leaving the familiar staff and routines of the NICU. A visit to the step-down nursery before their baby is moved may help ease their concerns. The step-down nursery will get parents to become more directly involved with their baby’s care, while still having staff expertise readily available when needed.  It can be a very reassuring experience.

The step-down nursery is usually quieter and a lot calmer than the NICU. There are fewer machines because these babies no longer require the type of intensive care the NICU provides. Babies need fewer tests now. But they still need a lot of care and rest to continue to grow and recover.  The transition made in the step-down unit is a rehearsal of sorts.  It brings a family to the point of being ready to go home.

Are you watching the remarkable NICU series on Discovery Health at 10 PM (ET/PT) on Thursday nights? Babies in the neonatal intensive care unit (NICU) need constant monitoring and 24-hour care from a variety of health care professionals. Here are some of the staff members parents are likely to meet in the NICU or during the months that follow:

Neonatologist: A pediatrician (children’s doctor) with advanced training in the care of sick newborns. The neonatologist who is in charge of the NICU is sometimes called the “attending” doctor. There may be several neonatologists in the NICU. For more information, read “What is a neonatologist?” from the American Academy of Pediatrics.

Neonatology fellow: A fully-trained pediatrician who is receiving advanced training in the care of sick newborns.

Neonatal clinical nurse specialist: A neonatal nurse with advanced training who works under the supervision of the neonatologist and who cares for sick and premature babies.

Neonatal nurse practitioner: A registered nurse who has advanced education (usually a master’s degree) and specialized training in working with premature and sick newborns. He or she works under the direction of the neonatologist, can perform many procedures, and helps direct each baby’s care.

Occupational therapist (OT): A health professional who helps evaluate a baby’s neurosensory development. (”Neurosensory” refers to the baby’s nervous system.) The OT focuses on feeding and swallowing issues, range of motion in the arms and legs, and developmental positioning.

Pediatric resident: A doctor who is receiving training in the medical specialty of pediatrics.

Physical therapist (PT): A health professional who helps evaluate how a baby moves and how any movement problems may affect milestones like sitting, rolling over or walking. The physical therapist aims to improve muscle strength and coordination.

Registered dietitian (RD): An expert in nutrition who has a four-year college degree. RDs have passed a national examination administered by the Commission on Dietetic Registration. Registered dietitians who work in the NICU also have had additional training in nutrition for children. These health professionals work with the neonatologists and nurses to help make sure each baby is getting all the nutrients she needs for healthy growth.

Registered nurse: A health professional who has passed a written examination after graduating from a college or hospital nursing program. Registered nurses in NICUs have experience in caring for sick newborns.

Respiratory therapist: A health professional trained to care for babies with breathing problems and to use the medical equipment needed to care for these babies.

Social worker: A professional who is specially trained to help parents cope with the emotional aspects of their baby’s NICU stay. The social worker can help parents obtain the information they need from their baby’s doctors, provide them with sources of information on their baby’s medical problems, help deal with financial difficulties and stress, and help parent make any special arrangements they may need for their baby’s discharge and follow-up care.

Speech and language pathologist: A person who is trained in speech and language problems. He or she often works with newborns in NICUs to help assist them with feeding problems.

Technicians: Staff members who perform specific procedures such as drawing blood or taking x-rays.

These health professionals are all part of a team that is working to help each baby get stronger and to help parents cope with this difficult time.   Parents need to remember that they also are an important member of the team and that they should never hesitate to ask questions about how their baby is doing or to learn ways they can help.