9 Truths Preemie Parents Want You to Know on World Prematurity Day

November is National Prematurity Awareness Month, and November 17th is World Prematurity Day.

First, here are some statistics to keep in mind:

• In the United States, about one in every 10 babies is born prematurely.
• The average pregnancy is 40 weeks long. A baby is considered premature when it is born before 37 weeks of pregnancy.
• The earlier a baby is born (especially those born before 32 weeks), the higher the risk of death or disability.
• In 2015, preterm birth and low-birth weight accounted for about 17 percent of infant deaths.
• Babies who survive can have breathing issues, feeding difficulties, intestinal (digestive) problems, vision problems, hearing issues or bleeding in their brains.
• Long-term effects may include developmental delays or learning disabilities.

While some people may believe once a preemie baby comes home they are doing “fine,” a preemie baby is always a preemie baby, and the baby’s parents are often hyper-vigilant of their child’s health and development. After all, most parents watched their children fight for their lives, sometimes taking one step forward and 10 steps backwards. Parents often grieve their shortened pregnancy and the implications it has on their babies. Others handle the weight of going home without their babies. And of course, we take this day to also remember the little ones who never made it home.

All this can be impossible to understand from the outside. To help spread awareness and compassion, we reached out to our Mighty parents and asked, “What is one thing you wish people knew or understood about having a preemie?”

These were their answers:

1. “[It is so lonely] despite the fact you are constantly surrounded by people. My little lady was in NICU for seven weeks, the longest and loneliest time of my life.” — Faith G.

2. “I wish people would understand that you cannot continue your life like it was before [the baby was born] because premature babies need much more care. You cannot go shopping with 2-week-old [babies] like others do because the baby does not sustain body temperature very well and is vulnerable to infections.” — Pillie M.

3. “Just because he ‘looks healthy’ doesn’t mean he actually is!” — Melissa S.

4. “It’s the scariest and loneliest experience you will ever have. You feel so helpless. I’ve had three preemies, one at 26 weeks (she was in hospital for five months) and two at 31 weeks (different years). Life just can’t carry on as ‘normal.’” — Suzzane W.

5. “You go through a roller coaster of emotions. My daughter was 14 weeks early and spent 13 weeks in the NICU. You aren’t able to have the happy memories of having your baby at that moment because you’re overwhelmed with fear.” — Stella A.

6. “I had four preemies and spent 15 months in total [at the NICU]. I learned that they are fighters beyond all. That family and friends do not ‘get’ what you go through as a parent and that you mourn the weeks you didn’t get to carry them. The trauma you experience having a preemie is beyond what you can imagine and often stays with you in forms of anxiety and PTSD. The fears you experience and see in other NICU parents chill your soul. Praying your child lives when other children do not. Experiencing guilt when other babies die and watching the suffering around you hoping with every hope possible it doesn’t happen to your child. Coming home with your baby and the silence of the bells and alarms is almost deafening and as terrifying as staying in the NICU. Wanting to scream at the nurses and doctors for appearing so cold and detached and knowing why they have to be. It’s a world like no other of which you never fully recover from.” — Elizabeth E.

7. “Stop asking, ‘When are they coming home?’ We don’t know.” — Erin R.

8. “The little things [that] may not seem like a lot mean the world to the parents. I can remember people bringing in treats and food for the refrigerator in the NICU, it was a glimmer of something sweet in a life of stress. Also, people knit baby hats for the babies and they are so sweet and since they can’t wear clothes it’s the only cute accessory [they] have. They would let us keep [the hats as] a reminder of how far he has come. The kindness of strangers was amazing.”  — Natalie M

9. “PTSD really does happen to parents of NICU babies. Our son was born six weeks early with spina bifida. He came home on a heart monitor and had to stay off his back for two months due to his back closure surgery he had the day after he was born. He is now 9 months old and doing well. However, every time I hear something that remotely sounds like an alarm of a monitor, I jump out of my chair. I was in a meeting the other day and someone’s phone beeped and I spun out of my chair to ‘check on my son.’ You can imagine the look on everyone’s face. I also wake up in the middle of the night and reach for my phone to call the NICU to check on my son… his crib is next to my bed. When I see a baby who was born on time without complications, I feel my anxiety start to kick in. Before I had my son, I would have thought someone who thought/felt this way would have been over-reacting. PTSD is real and definitely affects those who have had a child in the NICU.” — Rachel H.

Are you a preemie parent? What do you wish people knew or understood? Let us know in the comments.

Thinkstock image by herjua