World Prematurity Day is observed on November 17th each year to raise awareness of preterm births and the concerns about preterm babies and their families worldwide.
Approximately 15 million babies are born preterm each year, accounting for about one in ten of all babies born worldwide. – from Wikipedia
What does it mean to be born prematurely?
A full-term pregnancy is approximately 40 weeks long. Babies born before 37 weeks gestation are born prematurely. Those born before the 26-week mark are called micro-preemies or extremely premature babies. Approximately 50,000 micro-preemies are born in the U.S. every year.
On August 8th, 1990, shortly after 8 pm, my daughter was born four months early as a micro-preemie.
She weighed one pound fifteen ounces and could not survive on her own. That day I became a special needs mom. A title I knew nothing about and one every parent is horrified to own.
Sarina was twelve inches long, her eyes were still fused, and her lungs had not developed yet. Immediately after birth, she was intubated and put on a respirator. For four months, she lived in that incubator, a ventilator breathing for her. She had to stay in the NICU for 183 days until she was stable enough to come home.
Can you imagine one pound and fifteen ounces? Or 881 grams?
Most women remember tiny details about the day their baby is born. Pregnancy and giving birth is an ecstatic, happy adventure. She is becoming a mother, it’s a day of deep joy.
I remember every tiny detail of the day my daughter was born. My girl was ripped out of my belly by emergency C-Section four months too soon. After my water broke in the early morning hours, she battled twelve hours of life-threatening distress. And then her heart stopped beating.
While the incubator saved Sarina’s life, it also forced her away from the safe boundaries of the womb.
Putting my hand through the incubator door to touch her skin was the only way to connect. I folded a cotton handkerchief into my bra and wore it for a day. Then I tugged it next to my baby’s face with an illusion that she would recognize my scent. Did she?
I saw her scream without being able to make a noise. The constant poking of needles and alarms going off was nerve-racking. Her nervous system was not ready to handle the crazy sounds of the NICU. In 1990, sound levels in the NICU ranged from 54 -117 dB. The sound of a jet taking off is 125 dB.
There’s a long list of things that were horrifying to witness. Preemies like Sarina experience painful or stressful procedures up to sixteen times a day. I remember them all.
For the rest of her childhood, she was off and on oxygen and in fragile health. Battling pneumonia, enduring hospital stays and eye surgery she developed into a curious and sensible child.
Today Sarina is a strong and charismatic young woman. She is high-functioning on the Autism Spectrum and deals with a wide variety of executive functioning delays. She has difficulties with social interaction, organizing thoughts and actions, and time management.
What does high function mean and what is missing?
I see Sarina being either off or on.
Off is the state when she withdraws into the incubator to protect herself from too much stimulation. She is absent-minded, occupied with self-talk, unable to follow directions, and lost in time and to us. Sarina says: “I’m in my bubble,” and when I inquire further, she can get sad and sometimes frustrated, “I walk around inside my bubble. I can look outside, but people don’t look in. They don’t see me.”
On brings out her brilliance. When she is on, she’s ahead of her time. She is showing us how to be kind and accept each other. She doesn’t allow judgment or discrimination. She is an outside the box thinker and wears no mask. Sarina speaks her truth and doesn’t understand gossip or teasing. She forgives on the spot. She carries an inner light and points the way on how we can be with each other without pretending. She embodies joy. She challenges the concept of what together means.
Sarina cannot live alone and depends on us and her village to step up. She asks without words that we grow our consciousness to accept those who are different. Understanding that different doesn’t mean less.
She describes her challenges, “I’m born with hiccups.”
Sarina suffers from her dependencies and the fact that she doesn’t belong to anybody but us. She’d love a friend. She wants to have a partner and a job she loves.
She writes political rap songs and her dream is to be on stage.
She has many skills. Gifted with words, she speaks German and English fluently and wants to offer translation services.
In 2016, she started to knit adult hats for women’s marches. Soon people ordered her hats, and she used the money she earned to buy taxi rides. Her business flourished, and she is now able to make a small income to take voice-over lessons.
She has written a letter to her hero and knitted the most stunning hat for her. A hat in the colors of the rainbows is ready to travel to no one less than Ellen DeGeneres. Sarina is prepared to deliver the hat herself. Imagine that!
The most stunning idea landed in our life about six months ago. Out of the blue, Sarina announced, “I want to give back. I want to knit hats for the preemies in the NICU at the hospital where I was born.”
Sarina again became our teacher. She cannot do such a thing alone. Together, with our local knitting shop, we are organizing knitting events. Seniors, girls scouts, school groups, and people of all ages and walks of life knit for her project.
Her label “Hats with a Mission” was born and soon after the name for her business, Sarina’s Universe. The business holds a dream for Sarina to do work she loves and sharing it with others. Special people like Sarina are now invited to join us.
Today we have over three hundred hats knitted and Sarina has gifted them to NICUs in Germany and the US. In August, she gifted forty beautiful hats to the NICU in Cincinnati where she was born.
Imagine a micro-preemie knitting hats for preemies. Imagine seniors knitting hats for babies born too soon.
Imagine girls and seniors sitting at one table together with Sarina knitting hats for tiny babies and creating a community.
Imagine the hope, the possibility, the belonging! How can it be more brilliant?
I celebrate every mom and dad of a baby born too soon.
May our story give you hope on this World Prematurity Day and beyond!