Premature birth is something many expecting parents worry about.
Rylan's story: Tiny newborn defies enormous odds
Premature birth is something many expecting parents worry about. While in most cases there is no real cause for concern, at just 15 weeks along in her pregnancy, Casey, already a mom to three boys, began to show signs that premature birth was a possibility.
Terrified that something was wrong, Casey went to the emergency room. Doctors determined that she was dilated to five centimeters and they stopped the contractions. After a few weeks on bed rest, doctors knew she would not carry her little boy to full term. At just 22 weeks and 5 days gestational age, little Rylan entered the world weighing in at just 1 pound.
"The most fearful part was feeling as if I was alone and no one understood. Hearing that doctors were unsure of Rylan's 'unknown and uncertainty of survival' was the scariest," said Casey.
Since Rylan was so young when he was born and his little body didn't have all the time needed to grow, he had several health problems. After just a few days, it became clear that he needed special care. He was transferred to Nationwide Children's Hospital, where Rylan was among the youngest patients cared for in the Neonatal Intensive Care Unit.
Shortly after arriving, Rylan underwent several surgeries to repair and remedy problems including an underdeveloped heart valve, a hole in his bowel and optometric issues with both of his eyes.
Five months after he was born and weighing about 6 pounds, Rylan was able to go home for the first time. "It was scary but gave us the much-needed opportunity to adjust as a family," recalled Casey. "The value of life is immeasurable. We found strength in places we never knew existed and that's what it takes to realize that little miracles can and do happen-but first you have to believe."
Today, Rylan is 9 1/2 months old and continues to grow and make great progress. He weighs about 12 pounds and will soon undergo another surgery to correct his bowel. He visits the Neonatal Developmental Clinic every two to three weeks so specialists can work on bringing his developmental skills up to those of his peers.
"As a family, we want to thank the medical staff at Nationwide Children's who helped oversee the care of Rylan," Casey said. "His success is your success, too."
PEDIATRIC ADVANCEMENTS: Neonatal Developmental Clinic services youngest of patients
To those unfamiliar with premature birth, it's not uncommon to think once the baby leaves the Neonatal Intensive Care Unit (NICU), his or her treatment is finished. Unfortunately, those born prematurely often face a long road of treatment and care after leaving the NICU. At Nationwide Children's Hospital, experts in the Neonatal Developmental Clinic work with former NICU infants to ensure these little ones are on track for healthy and happy lives.
It's a great milestone for former NICU patients to go home for the first time. Unfortunately, developmental issues like growth, cognitive mental ability and motor skill delays often don't present themselves until the babies get a bit older-especially in those patients born at 32 weeks gestational age and younger.
"Infants are being born and surviving at much younger gestational ages. The smallest babies that are able to survive are as much as 4 months early and weigh only 1 pound. The brains of these infants are still developing and are very prone to injury and abnormal development in the newborn period. It is vital that they have close monitoring of the growth of both their body and brain as measured by weight and head circumference, not only in the NICU but after they are discharged to home," said Chris Timan, MD, medical director of the Neonatal Developmental Clinic at Nationwide Children's Hospital.
To track their development, these young patients are frequently asked to come in for their first visit two weeks after being discharged from the NICU. Through a battery of tests and screenings, the specialists at the Neonatal Development Clinic work with the patient's pediatrician to address any health or developmental concerns. During subsequent follow-up visits, the developmental staff works to bring these pre-term infants up to the developmental level of their full-term peers.
From Rylan's father
The following story was written by Rylan's father, Nathan Bell, before his son was discharged from the hospital.
Life is not only the execution of deliverables
Life is more than your destination
Life is lived, hopefully, to the fullest in every moment that is not promised
Life is the in-between
The quality of life is how hard you can love in those moments
How open you are to allowing others to love you
My son has endured more that I care to recant
Now, on this day he again is fighting for his moments
He fights for the moments of today and for future moments
And as he fights for his moments, he inspires
Beyond the sadness I feel watching him
Beyond watching his collection of digital statistics on the flat screen monitor
His pulse rate
His respiration rate
His Oxygen Saturation Rate
His Inspiration and Peep
All tell a story
A clinical story
Even though Rylan at this point has never had one day beyond the walls of a hospital
Rylan's story goes far beyond the clinical story the doctors in charge of his care, read twice daily during rounds
Heroes and healing. Bonding and relationships. Pain and obstacles.
Just to name a few of the story lines present
Each story line present in each moment, each breath, each gaze into his eyes
Holding onto hope and faith that the God I serve is also there in the moment, with him, and with us
I can barely hold back the tears pooling in my eyes as the machines charged with his moments flash and beep to tell everyone in ear shot that Rylan may not win this fight
Nurses, residents, fellows and doctors come over. Each moment a lesson to learn, each moment a victory Rylan relaxes and order is restored, for the moment
Life once again in the moments. And as every force we experience all of our lives, each and every force has an opposite, a contradictory force.
You push and someone else pulls, you jump and gravity brings you down. You live life and each moment death waits its turn, for its moment. Sometimes death is grandiose, others it's silent and un-telling.
I pray for my son, I pray for Rylan because as I told you his story is more than clinical. It's about heroism. Fighting daily against the force of death. Rylan is my hero. Each moment he is here is a victory over the doctor that said it was a mistake to place his mother on the magnesium drip to stop premature contractions at 21 weeks 3 days.Contractions that early are a sign of a unhealthy fetus he said. Rylan laughs at him now. Someone unhealthy could not, would not be kicking death's ass daily for 18 weeks.
Today is Rylan's day. We celebrate today and look to have more celebrations as the days turn to months and months change into years. But I know none of that is promised to anyone, let alone Rylan. But today, today is Rylan's day.