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March 8, 2013: Teen credits newborn screening for life-saving diagnosis

Evan Hromada will never know for sure what life would have been like had his metabolic condition not been detected shortly after birth. The 18-year-old from Edina is simply grateful that he'll never have to know thanks to the newborn blood screening that identified the condition when he was three days old.

"I think that it saved my life," Hromada said. "At the very least it made my life as normal as it could be."

Hromada, a freshman at Marquette University, spoke at the State Capitol Friday at an event to promote the benefits of newborn blood screening. Testing in his infancy discovered that he had galactosemia, a condition by which the body is unable to process the form of sugar known as galactose. The rare genetic condition makes people highly susceptible to dairy consumption, and if unmanaged can result in long-term complications such as speech impairments, cataracts, poor bone density and a form of muscular degeneration known as ataxia.

The issue of newborn screening has been politically controversial in Minnesota over the past decade. Privacy advocates sued the Minnesota Department of Health for the length of time that the state keeps newborn blood samples and for the ways beyond screening in which the samples are used. They prevailed when the Minnesota Supreme Court ruled in November 2011 that the state could not keep the blood samples indefinitely or use them for research purposes without specific consent from parents.

The state started in early 2012 destroying some of the blood samples it had stored, though at the time it was still hoping to gain court permission to retain thousands of older samples. Gov. Mark Dayton last spring signed a bill allowing parents to give explicit permission for the state to save blood samples from their newborns for research and testing purposes.

There has also been debate in Minnesota and other states on whether testing should be automatic unless parents opt out of it, or whether parents instead should have the choice to opt in to testing of their newborns. (Minnesota is an opt out state.) 

Hromada feels there has been harmful misinformation about how the samples are used. After the screening of newborns for diseases and genetic disorders, he said,  the samples are mostly used to test screening systems to ensure their accuracy. He has become an advocate for newborn screening.

"I've benefited so much from it," he said. "Without newborn screening, my life would have been so different."

Through careful management of his diet, Hromada has avoided long-term complications. He acknowledged that it has been harder to maintain a strict diet now that he is on his own at Marquette, where the cafeteria workers haven't always understood his requests for dairy substitutes or provided ingredient lists, but he is diligent.

 

Final edition: parenting books I didn't have time to read ...

After a 3-year run, the Daddy-O blog is winding down as I move from the children and families beat at the Star Tribune to the health and medicine beat. Thanks to readers for all of their ideas and comments that kept this lively blog cruising! As part of the transition, I am once again sorting through the massive pile of parenting self-help books that come my way.

So here is my third and final installment of "the best parenting advice I gleaned from books I only had time to skim!"

From socialsklz :-) for success by Faye De Muyshondt, regarding the importance of eye contact in an introduction:

Be sure that your kids are making eye contact for the entire introduction. Explain that it's not always easy to make eye contact, but that it is an important indicator of both confidence and respect, and that it also conveys engagement in the interaction. Ask your child to hold eye contact with you or a sibling for 15 seconds and count as you look at each other (also let them know that they can blink, so that it doesn't turn into a stare down!) This exercise bolsters confidence in making eye contact for future introductions.

From Teach Your Children Well, by Madeline Levine, about teaching children the value of hard work:

Do model enthusiasm around hard work. Some parents are so overwhelmed that their kids get the message that all hard work brings is stress and tension. Who wants to join that club? Let your kid know that when you work hard, you feel a sense of accomplishment and pride. Not every moment, but often enough to make your hard work feel worthwhile.

From The Big Disconnect, by Catherine Steiner-Adair, about the growing importance of family communication:

Family is the language lab of the digital age. Children's tech-connected socializing has taken them out of face-to-face conversations and limited their opportunities to build the basic skills for live dialogue and that entire dimension of interpersonal communication. It is essential that families create ways of coming together and talking about all kinds of issues, matters of the heart, fights, plans for the weekend -- the family equivalent of circle time in school that can offer an opportunity for thoughtful conversations and a process by which they can talk about the things that are really important to them, feel heard, respected and helped.

From The Parent Backpack for Kindergarten through Grade 5, by ML Nichols, about one of the five mistakes parents make with teachers:

Undermining the teacher at home or gossiping. It's not uncommon at the elementary level for things that are said or heard at home to leak back to the classroom. This happens more than you know. A teacher can often tell from a child's words or reactions when parents are not supporting her efforts or are speaking disrespectfully about her. Beware of 'little big ears.'

From The Last Boys Picked, by Janet Sasson Edgette, about what to do if a child refuses to go to a scheduled sport or activity:

Parents worry that by relenting they risk losing their credibility and power. If that happens, then it's more likely to be a function of the quality of the relationships within the family than the parents giving in. With a few exceptions, a person's credibility and power to influence loved ones are suitably robust to stand up to any one bad decision or action. I think parents in healthy relationships with their children stand to gain their respect and establish even greater credibility when they make comments such as, 'I'm not sure what to do here. I don't feel right making you participate in something that you so dislike, but it is important to me that you are involved in something outside the home where you have opportunities to interact with kids your age. Let's figure out a better solution.'

From Raising Financially Fit Kids, by Joline Godfrey, on dealing with peer pressure and money decisions for tweens:

This is the stage when, for kids, the stakes seem huge. To be in or out of the popular crowd matters. To be unique but just like everyone else is the impossible quest, and to be 'cool' is imperative. It is at this point that parents become a critical counterbalance to the power of peers. Just because your daughter says everyone is buying Prada jackets doesn't make it essential for her to have one. And just because that new motorized bike is appearing in every driveway doesn't mean you need to rush out and add one to all the toys already taking up room in your garage. In spite of the rolled eyes and the world-weary 'Whatever,' many kids would be perfectly happy to be out of the preadolescent rat race if their parents would just take them off the hook. If a kid can say to his friends, 'My dad is a jerk and won't allow (fill in the blank),' you get to be the bad guy, and he can still seem cool. Parents who let their kids run the show, abdicating their prerogative as grown-ups, give kids no place to hide from their peers.

 

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