#7 - Treat every inch like its a mile. JR
Dr. Adam Wolfberg was an obstetrics resident at Brigham and Women’s Hospital a decade ago when his wife went into unexpected labor three months before her due date. But he found his medical training and previous experience raising two other children (born full term) did little to prepare him for his daughter Larissa’s first frightening weeks of life. He wrote about his days and nights in the neonatal intensive care unit and the years that followed in a new book published last month calledFragile Beginnings.
I asked Wolfberg, now a high-risk obstetrics specialist at Tufts Medical Center, to provide advice to parents of preterm infants -- what he wished he’d known then -- to help guide them through the uncertainty and tough treatment decisions. Here’s what he recommends:
1. Ask your doctor, not the internet, for information. “A little knowledge is sometimes a terrifying thing,” said Wolfberg. When Larissa developed serious bleeding in the brain, fairly common in premature babies, Wolfberg hit the medical library to learn more about brain hemorrhages and the devastation they can cause in newborns: hearing loss, blindness, severe learning disabilities, and an inability to walk or live independently in adulthood. “I was thinking there was no hope.”
Wolfberg said he frequently encounters patients with materials, often inaccurate, that they’ve googled on various health conditions. While he consulted technical medical texts, he still didn’t get a complete picture of his daughter’s condition. “I have a personality type where I really want to know as much as I can,” Wolfberg explained. “I couldn’t simply listen to the advice and guidance that Larissa’s doctors were providing. But it had a downside, scaring me about all the possible things that could happen when each child’s hemorrhage is lot more nuanced that the textbooks make it appear.”
2. Think of your child as an individual, not a statistic. At Wolfberg’s urging, his daughter’s neurologist told him some specifics on prognosis -- that babies with Larissa’s severe grade 4 type of hemorrhage had about a 50 percent chance of having a “normal” IQ, greater than 70. “Thinking back now, I really wished I hadn’t pushed so hard,” said Wolfberg.
At age 10, Larissa’s IQ is now far beyond 70, and she’s in a mainstream elementary school taking math, science, and English classes along with her peers. “She’s a pretty bright kid, but it never crossed our mind that she would have as few issues as she’s had after hearing the statistics.”
3. Be your baby’s advocate in the NICU. “The nurses really appreciated my wife Kelly’s devotion to Larissa in the NICU,” said Wolfberg. “I think that it’s natural for nurses to feel enormous empathy for parents doing their very best for their newborns.” That, in turn, can help improve care.
He said he sees some parents who spend little time in the hospital, figuring that they don’t need to start parenting until their baby comes home.
“My feeling is that parents -- to the extent they can with their work schedules and family responsibilities -- should spend as much time as possible in the NICU. It’s good for them and their baby.”
4. Live in the moment. “The NICU is a day by day place,” said Wolfberg. What’s happening with your baby on a particular day may have no influence on where your child is at in two, five, or ten years down the road. “If I had simply focused on getting through each day, I think it would have been much less anxiety provoking instead of thinking about whether Larissa would be able to walk, talk, or go to school.”
5. Do as much therapy as you can after you leave the hospital. Like most users of the US healthcare system, Wolfberg was shocked to see that while his daughter’s $500,000 hospital bills were fully covered, he needed to pay for a good portion of therapy expenses out of pocket after his daughter was sent home at three months.
But he said he scraped together money to pay extra for a nanny who had previously worked with special needs kids. Both the nanny and his wife, he said, worked with his daughter every day on physical therapy exercises taught to them by a therapist.
Regular physical therapy sessions to help premature babies develop muscle strength and coordination is usually necessary for several years. Larissa experienced low muscle tone on the right side of her body as the result of being deprived of oxygen during birth, but the therapy she had, said Wolfberg, minimized the neurological damage and enabled Larissa to reach all her developmental milestones at the appropriate time.
“Did all the therapy help? I don’t have the scientific evidence to demonstrate that, but I’m 110 percent confident that it did.”
6. Develop a support system. While it can be pretty tough for parents of preemies to get out of the house, online support groups can be helpful for getting advice on everything from sleep problems to finding the right pediatrician. Wolfberg and his wife foundhemikids.org -- for parents of kids who had brain hemorrhages as infants -- to be very helpful and said many of his patients at risk of preterm birth turn to keepemcookin.c
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