When Prematurity Awareness Day rolls around each year, I think, “Yes, I am extremely aware of prematurity.” If you’ve delivered a baby prior to its due date, chances are you’re highly aware of it too. Our friends and family are aware. Most people we know are “aware” of it by association. But what does awareness really mean?
- knowing that something (such as a situation, condition, or problem) exists
- feeling, experiencing, or noticing something (such as a sound, sensation, or emotion)
- knowing and understanding what is happening in the world or around you
We know prematurity exists. Many of us here have experienced it first hand. We understand all too well the emotions and repercussions that come with delivering a baby too early. But for those who have not been directly affected, there’s a lot they may not know.
Facts about prematurity
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- In the US, approximately 1 in 10 babies is born prematurely.
- Preterm birth is considered prior to 37 weeks. That means only 3 weeks before full term, babies are at risk for respiratory issues, feeding issues, and more. Babies born earlier than 37 weeks are at an even higher risk for conditions such as brain bleeds, necrotizing enterocolitis, retinopathy of prematurity, and more.
- Preterm birth happens for a variety of reasons, but there is often no known cause for premature labor.
What is a little harder for some to understand is it doesn’t end when you leave the hospital.
- Parents can experience guilt, depression, and even PTSD for months and years after their NICU journey has ended.
- Prematurity can result in learning disabilities, behavioral issues, and other long-term problems that cannot be predicted upon discharge.
- Up to 45 percent of infants weighing less than 3 1/4 pounds at birth have one or more abnormalities on testing at school age (source). Many of Hand to Hold’s “first families,” the ones that came to us when we began providing peer support six years ago, now have school-aged children and are having to navigate the world of testing, 504 accommodations, and Individualized Educational Plans.
Arming yourself with facts is one of the best ways to spread awareness of prematurity. But it’s also important to realize that experiencing prematurity is about so much more than facts.
It’s about emotions and hardships.
It can put some relationships at risk, while strengthening others.
It can bring people together. It can cause friends to drift apart.
It can result in guilt that is carried for years. It can result in successes that can only be described as miracles.
We asked our NICU Family Voices Contributors what they would like people to know about prematurity. Here are their answers.
Prematurity awareness: What we want you to know
Your perspective about life changes. You begin to appreciate things in a whole new way. — Ima Carnelus, mom to Jaxson, born at 22 weeks, 6 days. Jaxson spent 119 days in the NICU.
Everybody develops at a different rate, and we have lots of doctors and specialists to help us make sure that our baby develops the way they need to. Please don’t try and “diagnose” or figure out whats “wrong” with our child! — Jessie Threlkeld
It changes the way you parent. You are always on guard. You are not passive. — Danielle Dreger, a former 30-week preemie herself, and mom to a 27-week micro preemie. Her son Theo spent over 200 days in the NICU.
It doesn’t stop when you leave the NICU. — Andrea Mullenmeister, mom to Jaxson, born at 23 weeks, 3 days. Jaxson spent 93 days in the NICU.
You are never the same person after you fear that you will lose your child. — Summer Hill-Vinson, mom to a 26-weeker and a 29-weeker, who spent a combined 150 days in the NICU.
It’s painful even years later. The fact that [your baby] is completely healthy and hasn’t had an issue since leaving NICU doesn’t negate what happened, and it doesn’t negate what very well could have happened. – Karee Marsh, mom to 26-weeker who spent 103 days in the NICU.
There’s no rhyme or reason why it happens. — Eric Ruthford, father to a 22 week, 6 day micro preemie, who set a record for most immature survivor to come out of his NICU, the busiest one in the state of Washington.
The greatest advice I was given was “three steps forward, two steps back” in our prematurity journey. I never believed in the darkness that one day my son would be healthy and active. I never believed he’d start kindergarten. He’s in 1st grade. It really does get easier. — Katie Reginato Cascamo, mom to a 30-weeker who spent 56 days in the NICU.
Prematurity awareness is so much more than simply knowing that 1 out of 10 babies is born preterm. It’s understanding that prematurity often occurs with no known cause. It’s advocating for prenatal and maternal healthcare for those who need it to prevent the preventable preterm births. It’s understanding that although a baby is deemed healthy enough to come home, he or she still has many challenges to face. It’s realizing that entire families are affected, for years to come.
We’re out of the woods; we just never know what’s around the corner. — Kelley Benham French, author of Juniper: The Girl Who Was Born Too Soon
Thank you to all who support Hand to Hold in our mission to provide comprehensive navigation resources and support programs to parents of preemies, babies born with special health care needs, and those who have experienced a loss due to these or other complications. Because of you, we are able to continue our work of not only raising awareness of prematurity, but all that comes with it.
December 12, 2015 I awoke for the 6th time that morning just a little after 6am, with the sensations of needing to pee. All throughout the previous night I felt very exhausted to the point that I layed within a full body pillow upon my mother’s living room couch (in which my husband David, my than 1 yr old son Benjamin, and my beautiful companion Asia our family pet resided as well.) Sometime after returning home from work and just before dinner was served. I was just a day over my 23 weeks pregnancy of identical twins.
Discouraged, that once again I was unable to urinate I complained to my husband quietly as not to arouse our son from his slumber as I climbed back onto the couch to rest. (My husband and son slept next to me on the floor besides me…. very touching I felt)
I recall, that there was an sharp radiating pain I suddenly felt in my back. It caused me to quickly stand and pace…. than another similar sharp pain… and another. I exclaimed to David, that something was not right. This felt to much like the labor pains I had experienced with my all natural birth of Benjamin. I doubled over grasping onto the couches arm for support to not fall and cringed. All David could ask was ” are you really trying to have those babies now? It’s not time.” My husband’s lack of empathy in his response upset me, it felt to me as if he was not believing the seriousness in my state. The rush of needing to urinate fleed through me and I briskly escalated up the stairs to the rest room where now both my husband and now crawling son followed after me. The pressure I felt along my pelvic area was heavy and very apparent that this deff was not right. Suddenly, woosh……my water broke scaring both David and I. DAVID….. I exclaimed m, and he pivoted on his heels and ran to get the car not realizing that he was leaving Benjamin at the top of the stairs. I on the other hand now had to rush to my son’s aide and fled back into the bathroom where I lapped at the toilet bowl with my hand searching for the possibility that one of my babies would be inside. Than almost immediately there it started I was going into labor right then. Wobbling to the stair case holding Ben in one arm the other on the banister i ascended downstairs trying not to rotate my hips in any way or bear down either. As I felt the last step David rushes back into the house and I told him it was to late they’re coming now!
I watched as if seeing it from an outer body experience, David taking and setting ben onto the couch, calling 911 and following the procedures of delivering our girls. It was such an mesmerizing moment I will never forget.
Zaylah Marie was born there inside my mother’s home on her living room floor…… she was Resessatated by the responding fire dept. On her dining table, my child Zariah Anne-Nicole would later be delivered in the hospitals Emergency dept. Where 4 code teams met our arrival. She was breached due to their umbilical cord knotting up together. Both of my girls were placed on ventilation machines and held inside of individual incubators.
I was faced with the first of many heart wrenching decisions to discuss and accept end -of- life procedures for my micro preemie baby girls. Zaylah was given an 80/20% chance of 20% having an opportune chance at a normal life, Zariah and 90/10%. I could never ever dream of causing pain to not only zariahs life but ours as well by holding onto her and potentially causing loads of suffering. I lpom at Zaylah today and see how much of an blessing my family has been rewarded with and just how mind blowing she has been in her overall turn around since discharging from the NICU. With her mild signs of Cerebral palsy, she is standing crawling learning how to walk, just now she has begun to take her first two independent steps…. she communicates effectively, still she utilizes the assistance with her Gastrointestinal feeding tube, but she does eat solids by mouth as much as she can tolerate. She strives and thrives to be just like her older full term and healthy brother. Mimicking his milestones as her own, and brings so much love, strength, warmth, and joy to our lives.
I could never not admit that I wish to the higher power I had, had all of my babies here with me today. As much as I hate to expose this truth in myself… but I find it very distasteful of myself for not grieving on Zariahs passing as other parents would or should….. it is like I almost forget at times, until like now as I stumble upon literature or blogs about twins, preemies, loss of a child. Etc…..
I cant say if I had a to do over on my decision would I do differently because I know I wouldn’t. I just can’t accept the harsh reality of my own minds thinking that pulling the vent from her caused suffering to her last moments. I am faced with a fear that she sufforcated and I did nothing to help her. I held her upon my chest as she took her last few breaths and never never did I once even ponder this happening. I feel so guilty and in such pain on this fact. I miss her so very much. I do not understand why things happen, and I take zaylahs recovery as she is surviving both for herself and her sister. Zariah was 1lb 2oz 14 inch. Long, Zaylah was 1lb 1oz 14 inch. At birth.
Zariahs final moments RIP my darling girl I miss you terribly my love.
Zaylah in the first month of life inside the NICU.
My amazing little girl has bloomed so beautifully, she is wearing an eye patch for therapeutic exercises.
To all parents upon this forum God bless you all, and may he bring some type comfort to all who suffer. I love you all, and am so very blessed to share similar experiences as within our journey’s.
Janelle, thank you so much for sharing your touching story with us. You did all you could for Zariah and continue to be a strong parent for Zaylah. Please don’t hesitate to contact us if you would like more support in the form of a peer mentor or our private Facebook group (https://www.facebook.com/groups/handtoholdNICUfamilies/).
Thank you so much. I could use all the support available. It is trialing at times to remain independent, and a parent… recently, I’ve been reading the better mom devotional by Euth Schwenk, she explains our roles as parents but under the Lord’s viewpoint of how we are to manage by putting our trust in God and letting go of any fears. It has been an all around wonderful reading. I honestly would like more info on a peer mentor,and whatthat details please. Thank you for responding to my story, I appreciate that it was read. Many Blessings’
JMM