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19 Truths Parents of Preemies Wish Others Understood

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Preterm birth occurs when an infant is born before 37 weeks of pregnancy, and in 2014 preterm birth affected one out of 10 infants born in the United States.

Preterm birth is the largest contributor to infant mortality and a leading cause of long-term neurological disabilities in children. Premature babies, or preemies, may have problems breathing and feeding, as well as issues with vision and hearing as well. Though it can be an incredibly stressful experience, advances in medical care have helped more babies survive today than ever before, according to March of Dimes. Still, raising a preemie can seem quite overwhelming.

The Mighty teamed up with Parents of Preemies Day and Preemies to ask their Facebook communities what parents of preemies wish others understood about their experiences. Here’s what they had to say:

1.  “Just because they are small… doesn’t mean they aren’t mighty! They aren’t limited because of being a preemie.” —Karen Scott

Newborn and hand

2. “There’s a major grieving process over not experiencing a full term pregnancy and birth. [There’s] envy over seeing other moms full term pregnant, being able to take babies home, etc.” —Ashley Lappe

3. “A preemie is still a preemie even after they go home. Even when they look and act like kids their age, they are still preemies.” —Beth Schreier


4. “There is no such thing as spoiling a preemie!” —Cara Elaine

5. “Despite being surrounded by so many people (doctors, nurses, etc.) you feel very alone and isolated.” —Kim Elledge Ciuffardi


6. “They always take one step forward and 10 steps backwards.” —Aletta Marian

7. “Each preemie is different. They each reach developmental milestones differently, some needing more help than others.” —Nichole Wardell

8. “The journey doesn’t end when they leave the NICU.” —Andrea ‘Dolney’ Mullenmeister

Newborn baby in incubator

9. “The affects of being born prematurely are unknown. You never know what issues may pop up after you are out of the NICU.” —Heather Watts

10. “Even though my son looks perfectly healthy, his lungs and immune system are still at risk. I wish [others] understood how I feel it is necessary to keep him isolated for the winter months because I only wish to keep him safe and healthy.” —Kristine Coma


11. “[It’s hard] to hand my girl to another person. For too many weeks I had to ask the permission of another to touch her, to hold her, to be her mother. Yes, I am possessive; I have earned the right to be.” —Alyson Fisher


12. “You never feel at ease. It’s like you’re just waiting for bad news.” —Amanda Y. Mangas

13. “It was so hard not being able to hold your baby for days or for some, weeks. It was even harder going home without your baby.” —Erin Elizabeth

Mother and baby

14. “Having a preemie changes your perspective on life. Forever. The fragility of a tiny life, how we take so many things for granted, how life can change in an instant — all of these things affect your world view after you’ve had a preemie.” —Marie Higgins Williams

15. “We are not being antisocial or rude — we are trying to keep our baby healthy so they can get strong. They might look healthy, but inside their immune systems are much more at risk and getting sick is much more serious.” —Elisabeth Cinque


16. “[It can be hard] looking at all the adorable newborn photo sessions. There’s a feeling you were robbed of so many experiences other mothers take for granted.” —Niccole Gifford Owens

17. “I am not being a jerk by asking people to wash their hands before trying to touch my little baby, and I’m sorry, but if you’re a smoker, you really shouldn’t be near my preemie. My baby’s health is more important than how offended you feel.” —James Nik


18. “Just because they may be struggling and we have to spend time in the NICU doesn’t mean we are any less happy and joyous for our child.” —Amy Lewis

19. “They’re much stronger than anyone expects them to be! They’re tiny and fragile and compromised, but they fight harder than most people on a daily basis.” —Didi Littlefield Hoskins


Are you the parent of a preemie? What’s one thing you wish others understood about your experience? Let us know in the comments below.

Originally published: November 17, 2015
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