Imagine a young woman who has a baby growing in her womb. She is seeing her doctor regularly and heeding the doctor’s advice, taking pre-natal vitamins, exercising, following a recommended diet.
She may have even undergone genetic screening that may indicate the possibility of birth defects for the child she is carrying. She passes the early tests, no indications of possible genetic defects. Things are moving along just fine.
Suddenly, 26 weeks into her pregnancy she starts going into labor. A tiny child is born prematurely.
Commonly the child will spend two months in the Neo-natal Intensive Care Unit.
Imagine being that mother, watching that child in an incubator, growing, but the child’s chances of making it are questionable.
She has done everything right. She took her doses of folic acid, which help to fend off birth defects. She exercised and ate nourishing food.
More than half of all premature births come as a complete surprise, without any warning signs.
That happened to one Escondido woman and perhaps many more. But this one decided to share her story. Her name is Donna Schweitzer. Her “rock,” is her husband Michael.
It is a tale of bad days, micro-preemies, brain-bleeds–grades 1-4, Patent Ductus Arteriosis ligations and hope.
Her son Ryley was born after around 182 days of pregnancy and weighing two pounds and at 15 inches, which is fairly long for a micro-preemie, or “26-weekers” as Donna calls them. Most babies come to term at 276 days, or 39 weeks.
The average “26-weeker” weighs around 1 1/2 pounds and measures 10 to 12 inches.
“When we try to tell people what two pounds look like. It’s like your average size pineapple is one way to say it,” said Donna.
Like other preemies, he spent the time he would have had growing in the womb in a Neo-natal Intensive Care Unit incubator.
Ryley spent 93 days in the incubator. His mother came every day. His father stood by her like a rock.
“I would get really emotional and Ryley would have a really bad day and I would be convinced the end is near, but he just was steady the whole time.”
“I guess for any parent it’s kind of hard to have to leave your child every night,” she said.
Preemies face a bewildering array of health problems from the very start. First, Ryley had a brain-bleed, “which is super common for micro-preemies,” Donna said.
“His (bleed) resolved without causing any damage His was a grade 1-2, but I have friends whose babies had grade 3s and 4s, and grade 4s don’t generally survive because they have too much damage,” she said, matter- of-factly, “Grade 3s can cause developmental delays or even epilepsy further down the line, because the bleed causes damage.”
Donna acknowledges that “most micro preemies don’t come out like Ryley. They have lifelong issues coming from being a preemie.”
Many of them have PDA, or a hole in their hearts, which can be fixed by surgery, Many of them die.
The Schwietzers were extremely lucky with Ryley. Other preemies “will have vision or hearing problems or hearing loss and that’s because of lack of oxygen.
They don’t turn out like my kid,” Donna said.
She counts herself as lucky. Out of every 100 26-week preemies, only two or three turn out like Ryley.
“When he was three they said he was developmentally caught up. When he was four he was diagnosed with asthma, which is not unexpected for the preemies, because of what the (ICU) ventilators do to their lungs. So he has mild asthma,” she said.
At age 8 he was diagnosed with Attention Deficit Hyperactivity Disorder, which is also common for preemies.
“Other than that, he’s a perfectly normal, healthy 15-year-old boy,” Donna said. He is a freshman at Escondido High School and plays on the golf team.
Donna got involved with March of Dimes, first by sharing her story with that of other “NICU” (neo-natal intensive care unit) parents on its website, marchofdimes.org
She started her own blog, participated in community forums and “started reaching out to other moms and grandmothers and aunts and dads who have been there or are there and telling our story.”
She adds, “You do get an opportunity to give back to parents who are where you were 11 years ago or 15 years ago. It helps heal me, and that’s still an ongoing process, but also gives peer support to other parents.”
Alexandra Loker, the Executive Director of the March of Dimes, says that more than 380,000 babies are born prematurely in the United States each year. Prematurity is the biggest killer of children aged 0 to 5.
“We have lots of families that have been touched by the March of Dimes either because they were lucky enough to have a healthy baby or perhaps because the baby was born prematurely with a birth defect.”
The charity focuses on preventing birth defects, premature births and infant mortality. Loker said research is needed to be able to identify premature births before they happen, to solve the puzzle that has impacted so many families.
The March of Dimes will hold a Walk for Babies, 7 a.m. registration, 8 a.m. walk starting at the Oceanside Pier Amphitheater on Saturday, April 9. The goal is to raise $85,000 for research into prevention of the March’s three goals.
Another Walk for Babies takes place at Balboa Park 2514 Sixth Ave. in San Diego, 7 a.m. registration, 8 a.m. walk. Both San Diego events have a target of reaching $500,000 for research.
“We encourage fundraising of course,” said Loker, “But it’s free and there are lots of families, lots of strollers, lots of dogs and it’s a beautiful morning, and we’ll have lots of entertainment.”