The Flint water crisis has captured national headlines after reports that the city’s water had been contaminated with dangerously high levels of lead – and that children and other residents had unknowingly been drinking this water for more than a year.
This is upsetting and concerning news to pediatricians like me. We know lead is a neurotoxin. We know children are experiencing major brain development. Science tells us that this toxin could hinder learning, long term achievement, classroom performance and cause behavior and other issues for young people.
There is simply no safe level of lead, period.
What some people may not realize; however, is that water is not the most common source of lead exposure in our country. Lead from water accounts for an estimated 10-20 percent of elevated lead levels in children. The bigger risk for lead exposure is found in the buildings where children spend most of their time, usually their home, and sometimes a family member’s home, daycare, or school.
A red patch of yarn dons the limbs of a stuffed Star Wars’ Chewbacca, pink dragon and polar bear lined up around 12-year-old Juliette Harrison.
The spots on Juliette’s handmade, crocheted animals represent the condition they share with their young creator: arthritis.
“They are like friends that kids can take to appointments, someone who is like them,” says the sixth grader, of Saline. “It makes me feel good that I can help other kids that are going through hard things too.”
Like many families, the reality of how fortunate we are to live near one of the country’s top ranked children’s hospitals was not something we ever really thought about. That all changed when Danno came into our lives.
During a routine ultrasound while I was pregnant with twins last year, the doctor discovered that the heart of one of the twins was not developing properly. We learned even before he was born that our son, Daniel (eventually nicknamed Danno after we all fell in love with our 2-year-old’s attempts to pronounce his baby brother’s name) had a congenital heart defect. The exact diagnosis was double outlet right ventricle with pulmonary atresia and a large ventricular septal defect. It’s a mouthful, and we were frightened, but knew we were in good hands at University of Michigan.
In early October, I was admitted to U-M’s Von Voigtlander Women’s Hospital because my twin boys were beginning to show signs of distress. The doctors decided to deliver them on October 27 at 34 weeks gestational age.
Essentially, SMA is the pediatric version of ALS (Lou Gehrig’s disease).
We were told that she wouldn’t live past 8 years old. She’s clearly blown right past that prediction – she is 18 now, and is an incredibly positive, optimistic young woman.
I’d love to say she hasn’t slown down a bit, but the truth is – she has. Erinne used to walk with the assistance of a walker, but the disease has progressed and limited her physical abilities. She now she uses a power wheelchair, needs assistance to feed herself and breathes with the help of a ventilator while she’s sleeping.
One of the challenges with this disease is managing Erinne’s pain. She has four rods in her spine and a dislocated tailbone that causes severe pain. We tried many avenues to manage the pain without much success until our care team suggested a referral to palliative care services.
Last Christmas Eve, after more than 20 days spent at daughter Hannah’s bedside, Marsha and Tommy Coulter were called into a Texas hospital conference room faced with an unimaginable decision.
“The doctor asked us to consider taking Hannah off the vent and letting her go,” Marsha Coulter remembers. “It was one of the worst days of our lives. The worst Christmas Eve we could imagine. We cried all day and night. I begged God to keep this from happening. We were just hoping for a miracle.”
For 14-year-old Hannah, every breath was a battle. A lethal combination of a small chest cavity, an artery pushing up against her trachea and a rare, life-threatening disease that weakens the windpipe called tracheobronchomalacia had made breathing and eating increasingly difficult for the teen, who also has autism. Other surgeries hadn’t helped and few options were left.
As parents, everything concerning our child’s health concerns us. We are the ones who take them to the doctor for that first shot, first fever and first broken limb. We naturally always want to be there, so it can be nerve-wracking to let our kids begin to take the lead at health visits, especially the first time we are asked to leave the exam room.
As our children grow up to be adolescents, it’s clear that they aren’t always comfortable talking about their bodies and health with us in the room. Despite this, we still may be hesitant to leave. Some parents may be concerned that their child is keeping secrets from them, or that the doctor may give their child guidance they don’t agree with. Other parents may just want to feel like they’re “in the loop.” Continue reading →
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