Helping Siblings Cope with the NICU

Helping siblings cope with the NICUWhen one child is hospitalized, it can affect the entire family. A patient’s siblings can feel confused, jealous, angry, or even guilty over the hospitalization of their brother or sister, especially when it’s a new baby.

Toddlers and preschoolers can have an especially hard time coping with mom and dad being away. To cope with this jealousy, try to keep their daily routine as normal as possible. Spending one-on-one time with the Neonatal Intensive Care Unit (NICU) baby’s older sibling is important for maintaining a sense of normalcy. Even brief amounts of regular time can help maintain a sense of fun and family.

No matter their age, it’s important to remind siblings that it’s not their fault that new baby is in the NICU. Sometimes little minds can run wild, and it’s essential to remind them that they did nothing wrong to cause their brother or sister to stay in the NICU.

Parents can address some of siblings’ most common questions about the NICU:

  • “Why is the baby so small?”
    • Babies stay in their mommy’s tummy for nine months so they can grow and get ready to come out. But some babies come too soon and don’t have enough time to grow inside mommy’s tummy. They are very tiny because they came too fast.
  • “Why is my baby in a box?”
    • Educate little ones that incubators are special beds for small babies to keep them safe.
  • “What are all these machines?”
    • Tubes help get the food right to the baby’s tummy so they don’t have to do any work.
    • The baby is small and needs to rest, so tubes help the baby take deep breaths without having to do any work.
    • These machines are helping the baby.

Giving a “job” to siblings can also help them cope and make them feel like they are contributing to the baby’s care. When they’re at home, siblings can make a card or draw a picture that mom or dad can bring to the NICU. Remind siblings that the new baby knows their brother or sister’s voice, so reading or singing quietly to the baby can let them know they are there. Sibling education classes can teach big brothers and sisters how to help mom and dad change a diaper, or feed a bottle to their new baby brother or sister.

Siblings are able to participate in special activities organized by CHOC Children’s child life specialists. Volunteers are on-call to play with siblings or escort them to organized activities when mom or dad needs to be alone with the NICU baby. For more information about other ways CHOC Child Life can help families navigate their experience in the NICU, call 714-509-8473.

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Small Baby Unit Outcomes: Big Improvements for the Littlest Patients


CHOC Small Baby Unit patient, Emma Faith, who weighed only 1 pound 4 ounces at birth.
CHOC Small Baby Unit patient, Emma Faith, who weighed only 1 pound 4 ounces at birth.

Weighing in at just 1 pound and 4 ounces at birth, baby Emma Faith received a special nickname from the nurses who cared for her inside CHOC Children’s Small Baby Unit (SBU): Mighty Mouse.

Three years later, Emma Faith is living up to that title as an energetic little girl, one of scores of children who have received treatment inside the SBU since it opened in 2010. Thriving and flourishing, she is the perfect embodiment of the impressive outcomes reported by the unit.

Recently released three-year data show a notable shift in outcomes for patients discharged in 2012, compared to those discharged in 2009, before the opening of the 12-bed unit for infants born at less than 28 weeks gestation or smaller than 1,000 grams:

• Weight and head circumference: In 2012, just 16 percent of all infants discharged from the unit were below the third percentile for weight and head circumference, while 39 percent were in 2009. These factors are linked to cognitive and physical disabilities.

• Oral feeding rates: In 2012, 84 percent of infants were being fed completely orally, rather than through a feeding tube, upon discharge, compared to 65 percent in 2009. CHOC’s SBU practices infant-driven feedings, wherein the baby drives her own advancement of nipple feeding – not staff.

• Infection rates: In 2012, 15 percent of infants suffered hospital-borne infections, while 41 percent did in 2009. The SBU attributes this dramatic shift to a team approach, a reduction in central lines and excellent hygiene among staff and families.

• Chronic lung disease rates: In 2012, 27 percent of infants left the unit with chronic lung disease, compared to 45

Emma Faith today.
Emma Faith today.

percent in 2009. This common condition for premature babies can have long-lasting ramifications including re-hospitalization and poor neurodevelopment. Related, in 2012, 11 percent of infants went home from CHOC’s SBU on oxygen support, while 32 percent did in 2009.

• Labs and X-rays: The numbers of labs and X-rays have each been reduced by about half since 2009.

The unit opened in 2010. Though preterm infants were already receiving exceptional care in the NICU, CHOC physicians recognized that increasing medical literature-based efforts could improve outcomes.

Specifically, research indicates that babies with extremely low birth weights (ELBW) could greatly benefit from guideline-driven care provided by dedicated and specially trained staff inside a low-stimulus environment.

Three years later, the SBU is doing just that.

There, patients lie inside shrouded incubators that keep light away from their underdeveloped eyes. Even a whisper is harsh for these babies’ ears, so families and staff members speak in a gentle “library voice.” The goal is to mimic the womb’s environment as closely as possible so that infants can focus on growing.

“We’ve created this really unique place that only a handful of hospitals have,” says Dr. Antoine Soliman, a CHOC neonatologist.

But the space is equally nurturing for the parents of these tiny babies. Here, they find solidarity and support as they bond over an experience most parents cannot understand.

“We grew a bond, and we’re still very close. They are my family,” says Emma Faith’s mother, Eunice, who became close with other parents during her time in the unit. “We understand each other.”

Moving forward, the SBU’s goal is to continue to improve patient outcomes, as well as family and staff satisfaction, while also becoming a destination for the care of extremely preterm infants.

More stories about the Small Baby Unit:

  • One family, two NICU stays
    Each year, one in 10 babies in the U.S. are born prematurely. For the Cushing family, that statistic is two in two. Eleanor and Spencer’s eldest son, James, was born ...
  • Meet CHOC NICU graduates
    As we prepare to celebrate the opening of our all-private-room NICU, say hello to a few graduates of the CHOC NICU.
  • Inside the Small Baby Unit: Ryan’s story
    Danielle McLeod was looking forward to an easy second pregnancy and ultimately caring for her infant son as a confident and assured second-time mom. But that expectation changed when little Ryan ...

Kangaroo Care: A Special Bond Between Premature Babies and their Parents

In honor of Prematurity Awareness Month, please take a moment to learn about one of our beloved, family-centered care techniques practiced in our Neonatal Intensive Care Unit – beneficial for babies, mommies and daddies alike.

Kangaroo care is the practice of giving a sick or premature baby skin-to-skin contact — usually against a parent’s chest. The practice has been adopted worldwide because of the significant advantages for premature babies. Studies show this kind of bonding has many health benefits for these babies, including assisting in maintaining an infant’s body warmth, higher blood oxygen levels, improved sleep, improved breast-feeding and improved weight gain.

It’s good for parents, too. Kangaroo care promotes bonding and boosts parenting confidence. Mothers showed improved breast milk production. CHOC Children’s NICU experts at both hospital campuses, promote skin-to-skin contact with even the most fragile little patients, including extremely low birth weight babies and those on ventilators.

There is no doubt there have been many advances in the care of sick and premature babies, not just in technology and medicine, but also in meeting their special emotional and developmental needs. Kangaroo care is one more technique contributing to a supportive environment that helps premature babies mature and develop as they would in their mother’s womb.

To learn more about our caring for babies in the NICU please visit our CHOC Children’s Pediatric Health Library at: .

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    NICU Mom Shares Her Journey

    In our continued recognition of National Prematurity Awareness Month, we asked one of our NICU moms to answer a Q & A regarding her current journey. Janelle agreed – hoping her responses would help another family experiencing the same thing.  Her daughter Isabella Rose was born at just 28 weeks gestation in August 2010, weighing two pounds, two ounces.  This strong, beautiful baby girl is still growing in our NICU – with the support of her loving family and CHOC staff.

    What brought your child/your family to the CHOC NICU?

    After about a week of feeding in the HOAG NICU, Isabella’s tummy was distended, and an X-ray revealed a diagnosis of necrotizing enterocolitis, a serious infection of the intestinal wall. She was transferred to CHOC Children’s Hospital that same night, in case she would need to have immediate surgery.

    Briefly describe your experience dealing with a child in the NICU.

    Bella is my first child, and her early arrival was a complete surprise during an otherwise perfect pregnancy. In the beginning, I was in shock, I had a hard time talking about what had happened and even getting out of bed to go see her the first few days, it was all too surreal. Once I was able to see her face and hold her, though, the bond was instant.

    They call the first couple weeks the “honeymoon phase” and she did so well that the nurses were calling her a rockstar and telling me she would likely go home early. I was, of course, excited but also holding my breath a little for any upcoming surprises in the long road ahead.

    I wish I could say that made what happened next easier, but it didn’t. I don’t think there is any way to prepare for having your tiny, but growing and healthy baby suddenly end up in a critical “touch and go” status.

    During the next three months at CHOC, our daughter would go through one hurdle after another. Her vitals would fall steadily for days, then the doctors would do something to help her turn the corner, and she would recover faster than I really ever thought possible, more than once. She was on multiple types of ventilators, had three surgeries, half a dozen blood transfusions and she fought through it all with such grace and strength, it took my breath away.
    What are things you’ve done to cope with having a child in the NICU?

    I began a journal about the experience, dedicated and written to Isabella, so that when the time is right, she can hear about her dramatic entrance into the world from my perspective. Perhaps it will be when she becomes a mother herself, or maybe I’ll use it as a reason for why she can’t date until she’s 21.

    I combined this journal with photos and video we’ve taken of her and put together a website to keep friends and family updated on her status. I’ve also gotten much more spiritually involved in my community.
    What kind of support have you received from the NICU team?

    The nurses and doctors became part of my family, and the rest of the hospital staff from the valets, to the security guards, to the receptionists became my best friends. Everyone is there for your child, and you feel truly lucky not only to be living in this country, but on top of that to be living in this area and have an establishment like CHOC on your side.

    What advice would you give to other NICU families?

    Everyone will tell you it’s a roller coaster, but you can’t imagine really what that means, and, on top of that, you never want to think that there are more free falls ahead.

    One thing I wish I knew ahead of time is how resilient these babies are. They almost seem designed to withstand more than we can as adults, which was a completely foreign concept to me when I looked down at my two pound baby girl.

    In the NICU, no one can provide the answer to the one big question: “When will my baby be okay and ready to come home?” The answer to every question will be “it depends on the baby.” But don’t let that frustrate you. Do your research and ask the challenging questions. Every course of action has a potential benefit and risk associated with it. Make sure you know what these are.

    You know your child better than anyone, and the CHOC team respects your opinion as a valuable member of your child’s team. You are your kiddo’s strongest advocate, so fight for them.

    There is no doubt that this experience changes you forever, as a person and as a parent; your perspective will never be the same. However, it helps to think of it as a crash course of the hardest part of parenting – the worry, the feeling powerless and wanting only what’s best for them. As one experienced mom put it to me – welcome to the club, this is just the beginning – wait until she’s driving!