The micro-preemie experience

They call the first 24 hours after a premature birth the “honeymoon.” It’s when the newborn remains relatively stable, after just being cradled — safe and protected — in mama’s womb. Then things seem to go haywire and suddenly, that tiny preemie’s fate is in the hands of the neonatal intensive care unit staff.

Can you imagine that for weeks on end, your only contact with the baby you just carried is through a plastic box? You can’t hold or even touch your little one through the ventilator opening because his skin is so terribly delicate.

This is a tribute to all the brave little souls out there, born before their time — those tiny preemies fighting to stay alive in their ventilator cocoons, covered with scary tubes and machines. And let’s not forget about the teeny tiny ones — those other little miracles — the amazing micro preemies, who have to struggle even harder to live.

Did you know that more than one in 10 babies around the world (an estimated 15 million) are born too soon each year? And sadly, about one million angels who don’t make it earn their wings because of preterm birth complications. In the U.S., preterm birth affects nearly 500,000 babies — that’s one of every eight infants. And it’s also a leading cause of long-term neurological and developmental disabilities in children. Further, it costs the U.S. healthcare system billions of dollars each year.

That’s why it’s so important to help raise awareness about prematurity here in New York.

The preemie experience

Kudos to all those courageous moms and dads, who have to cope with a devastating and almost surreal situation, as they watch, wait, and hope for any small sign of a miracle. Many parents admit that the preemie experience takes a toll on their marriages and causes profound emotional and economic burdens for their families. But they all strongly agree that with love, hope, faith, and the help and expertise of specialists, they feel better equipped to deal with the overwhelming stress and epic challenges they must face.

In honor of Prematurity Awareness Month, and the fourth annual World Prematurity Awareness Day on Nov. 17, organizations like the March of Dimes are hoping to educate all expecting parents about the possibility of and potential risks associated with preterm births, which occur prior to 37 weeks of pregnancy. Extreme preterm births of micro preemies occur prior to 26 weeks.

Author and New York mom Jennifer Degl went through a heart-rending experience after giving birth to her micro preemie daughter Joy, who is now 2. Degl said she would love to use this special day as an opportunity to spread awareness of prematurity and hospital neonatal intensive care units. (You can read her touching story, and find out about another mom’s preemie experience in Part 2 of this article.)

After her miracle baby came home from 121 days in the neonatal intensive care unit, Degl wrote a memoir called “From Hope to Joy: A Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds” http://www.fromhopetojoy.com. The book chronicles her life-threatening pregnancy, and Joy’s struggle to survive (while Degl’s three young sons were at home). She says it was quite a roller coaster!

Joy was born at 23 weeks in 2012, at Westchester Medical Center in Valhalla, New York.

“Due to modern medicine, prayers, and the amazing doctors and nurses at Maria Fareri Children’s Hospital, she is doing great today,” said Degl, whose early delivery was caused by 100 percent placenta previa, which turned into placenta accreta. Placenta accreta is a serious pregnancy condition that occurs when blood vessels and other parts of the placenta grow too deeply into the uterine wall, according to MayoC‌linic.org. Degl said she hemorrhaged at 17 weeks for the first of four times because of this alarming condition.

On the night Joy was born, the new mom started a journal on a sheet of paper given to her by a nurse. Once she was discharged from the hospital, a little blue notebook — in which she wrote everything — became her constant companion. Five months after the birth of her daughter, Degl went to write in her notebook; instead, she sat down and read her journal cover to cover. That’s when she knew she had to tell her story.

As many new parents know, consequences from extreme prematurity don’t end with release from the neonatal intensive care unit. There could be 100-plus doctor visits due to illness, along with numerous therapies, hearing or vision issues, or neurological problems. As a result, many moms have to deal with long-term depression and unfounded feelings of guilt.

Degl said her mission is to provide hope to women struggling with high-risk pregnancies, encourage expectant mothers to educate themselves before electing cesarean deliveries, give families of premature babies a realistic look at what lies ahead in their journey, and show that miracles can happen, and hope can turn into joy. [See her website: http://www.micropreemie.net and watch videos of Joy’s miracle birth and life at: https://www.youtube.com/user/FromHopeToJoy]

The Degls were the 2014 March of Dimes Ambassador Family for the March for Babies in White Plains.

To help further this important cause, Anne Geddes, who has photographed babies for 30 years, is teaming up with the March of Dimes to help raise awareness, and has donated a preemie image for this year’s campaign.

Did you know that worldwide, more newborns die from premature birth than from any other cause? Surprisingly, 75 percent of these deaths can be prevented, even without intensive care. Medical advances have been made but more research is needed to develop life-saving treatments and preventions, and find the causes of premature birth.

There are several reasons that may cause premature birth, and nothing prepares parents for this strange and emotionally taxing experience. In most cases, nature and the all-powerful uterus are to blame for fairly common factors, like uncontrollable high blood pressure, severe preeclampsia, or a bacterial infection. Let’s face it: carrying a baby is a bit of a gamble. We hope for the best, but sadly, it doesn’t always turn out to be a positive experience.

Gradually, those very first milestones help parents see the light at the end of the tunnel: such as the first time their little guy drinks from a bottle, when they hear their baby girl’s first cry after spending weeks in the vent, and that first smile!

Along with a preemie’s size and weight, a combination of different factors will contribute to the final outcome. There are many obstacles to overcome, so that these babies can survive and thrive.

And many do. They seem to defy all odds, growing up strong and healthy, like the micro preemies in the heartwarming stories you’ll read in Part 2 of this article. They’re living proof that miracles do happen.

Preemie problems

A developing baby goes through important growth during the final weeks and months of pregnancy. Many organ systems, including the brain, lungs, and liver need the final weeks of pregnancy to develop fully. Some problems that preemies may face include:

• Breathing problems

• Feeding difficulties

• Developmental delay

• Vision problems

• Hearing impairment

• Cerebral palsy

And a recent survey on prematurity awareness found that 79 percent of preemie moms have a baby who was hospitalized due to a severe respiratory infection.

All preemies, especially micro preemies, are more susceptible to myriad respiratory problems. One virus in particular that parents should know about, is respiratory syncytial virus, which is contracted by nearly all kids by the age of 2 and often causes mild to moderate cold-like symptoms. However, preemies are at high risk for developing worse symptoms, including a serious respiratory infection from the virus, because they are born with underdeveloped lungs and a lesser amount of vital antibodies needed to fight off infections. This can lead to bronchiolitis or pneumonia, which can become life-threatening.

Respiratory syncytial virus is most prevalent from late fall to early spring.

For helpful information about prematurity and respiratory syncytial virus, including the signs and symptoms parents should watch out for and the importance of prevention, go to: http://www.rsvfacts.com.

Music therapy

On her blog, www.preem‌ienew‌s.com, preemie parent Debra Kircher talks about music therapy in neonatal intensive care units; pacifier-activated lullabies, multimodal stimulation, and developmentally appropriate music listening is being shown in hospitals to help reduce the length of hospital stays, increase an infant’s stimulation tolerance, and enhance parent-infant bonding.

Respiratory therapy

Dietrich Flemmig has been a respiratory therapist for 22 years and has spent the last 12 years at New York-Presbyterian Morgan Stanley Children’s Hospital (Columbia University Medical Center in Manhattan) in the neonatal intensive care unit, treating predominantly premature babies. He’s a family friend of the Degls, so he was able to help them understand what Joy and they would be facing those first few months.

“Our role in the NICU as respiratory therapists is to apply various modes of respiratory support, ranging from basic bubble continuous positive airway pressure, to oscillators, which can ventilate at over 800 breaths a minute, which increases their chance of survival,” explains Flemmig.

“After Joy was born, Jen [Degl] reached out to me with questions and concerns, knowing my background. She tried to educate herself as a parent to increase Joy’s chances of survival. She wanted to know what the treatment options were.

“Jen had heard about bubble CPAP, which was pioneered at Columbia, and if I thought Joy would benefit from that course of treatment. I explained to her the benefits of that type of therapy.

“Jen also was concerned about the negative effects of high oxygen requirements on Joy. I explained that the most important thing was that Joy gain weight and muscle tone. This is where mechanical ventilation plays an important role. Parents many times want their intubated babies to be extubated but that forces the infant to breathe on their own, burning crucial calories and working harder than you want, not allowing them to gain weight and strength. A process of intubation and extubation is common practice which allows the lungs to rest and then develop muscle tone.

“I explained Joy had a long road ahead of her,” continued Flemmig. “Joy’s condition required substantial respiratory support, including high-rate ventilation. I explained to Jen there would be many trial periods of weaning and failure, which is unfortunately part of the NICU preemie experience. You find yourself taking one step forward and two steps back. But ultimately, it is important to remain positive and keep talking to your baby, building that connection between mother and child. I’m happy to say Joy had an exceptional outcome. From what I understand, she is thriving.”

To improve neonatal care in countries around the world, additional funding is needed: from low-cost steroid shots to promote lung development, to wider adoption of “kangaroo mother care” (the profoundly beneficial practice of skin-to-skin contact between a mother and her newborn).

Reducing the risk of premature birth

Pregnant women can take important steps to help reduce their risk of premature birth and improve their general health:

• Quit smoking.

• Avoid alcohol and illicit drugs.

• Get prenatal care as soon as you think you may be pregnant and throughout your pregnancy.

• Seek medical attention for any warning signs or symptoms of preterm labor (contractions, bleeding, etc.).

• Take vitamins, especially vitamin D and folic acid (even before you become pregnant).

• Avoid too much stress and get plenty of rest.

• Have a supportive partner or someone you can depend upon.

For more info: http://www.cdc.gov/reproductivehealth/MaternalInfantHealth/PretermBirth.htm

Preventing preterm birth

The Centers for Disease Control’s Division of Reproductive Health is engaged in research and science to practice activities aimed at understanding and reducing preterm births. Its scientists are collaborating with many partners, including state health departments, university researchers, and other healthcare professionals to understand why preterm births occur and what can be done to help prevent them.


The great news is that many more micro preemies are surviving than ever before in history. Families’ love, hope, strength, and determination can lead to miracles!

“From Hope to Joy” is available on Amazon and Barnes & Noble websites.

In honor of World Prematurity Day, donations can be made to a few organizations supporting preemies and their families through Degl’s website at: http://micropreemie.net/donations

Jennifer Degl’s book about her daughter Joy’s premature birth.