Saving a baby’s life with a 3-D laser printer

Kaiba's story

Ever since he was six weeks old, baby Kaiba often stopped breathing.  The part of his windpipe that carries air to his left lung would suddenly collapse, leaving him unable to breathe and requiring emergency assistance every time.

Kaiba had a condition called tracheobronchomalacia. It’s a rare condition – about 1 in 2,200 babies are born with tracheomalacia and most children grow out of it by age 2 or 3, although it is often misdiagnosed as asthma that doesn’t respond to treatment.

Severe cases, like Kaiba’s, are even more rare, and they are very frightening.

It’s a condition that has bothered me for years.  Children die from tracheobronchomalacia, but I hoped that help could be found for these children.

Kaiba’s parents, April and Bryan, were left watching helplessly each time he stopped breathing, praying that something would change and doctor’s predictions that he would never leave the hospital again weren’t true.

They lived in Ohio but they were willing to go anywhere if it meant they could get help for Kaiba.  Fortunately, they didn’t have to go far.

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Fighting for a cure

mott blog - faith falzoneThis weekend, we attended the Griese, Hutchinson, Woodson “Champions for Children gala at the University of Michigan. It is a fundraiser for C.S. Mott Children’s Hospital and the Charles Woodson Clinical Research Fund. Last year, my daughter Faith was the guest of honor. She was there as a representative of the many children at Mott who have a disease for which there is no cure.

Last year she was given a pass by her doctors to leave the hospital for the evening to attend the gala.  She had just had most of her colon removed and she had to have another surgery before she was able to be discharged from the hospital. I remember being skeptical that it was a good idea for her to attend. Her doctors had to change her total parenteral nutrition schedule, and I was worried that she would get too tired.

The morning of the gala, however, Charles Woodson came to see her in the hospital.  That changed everything. I knew from that moment it was going to be a great night for her. She had an instant connection with Charles, and finally – after a few long weeks in the hospital – she was starting to act like herself.

As magical as the night was, I left that evening and went back to the hospital to face the reality that we deal with every day. Even though Faith had been invited to attend because of her disease, I remember wishing that night that Faith had a disease that wasn’t so rare. So that I could feel more hopeful for a cure for her.

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Making a difference for children on the autism spectrum

Patient and family centered care in action

The Safety & Security team at C.S. Mott Children's Hospital created "Coping Kits" to help children with autism better cope with their hospital experience.

“Coping Kits” help children with autism adjust to the sensory experience of being at the hospital.

A visit to the doctor can cause anxiety for any child, but for a child on the autism spectrum, it can be especially challenging.

Sometimes a child’s anxiety can build to a point where it becomes problematic for the care team to do their jobs. Those of us in the security team at C.S. Mott Children’s Hospital started to see this happening more and more frequently. We’d get phone calls from clinicians asking for help with a developmentally delayed patient. We quickly realized that the way we might typically approach a patient was not effective in working with children on the autism spectrum.

We heard time and time again that some of these children had been denied care at other facilities because their behavior – which of course stemmed from the anxiety the environment around them triggered – made it too challenging for the clinicians to deliver care. We wanted to see how we could help ease their anxiety and make the experience more positive for everyone, so we started researching autism and ways to better respond.

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Hail to the Little Victors: Peter Bodkin’s Story

peter bodkin family

The Bodkin family: Sam Emily, Peter, Ben, Katherine

Our son, Peter, was born in Lansing, Michigan, on the evening of October 8, 2008 – healthy and happy after a normal pregnancy. Then, suddenly, when he was about 4 hours old, he turned blue. At 5 a.m., he was diagnosed with pulmonary atresia, a serious congenital heart defect.

We were transferred to C.S. Mott Children’s Hospital when Peter was just one day old, and six days later he underwent open heart surgery.

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For the heroes behind the heroes, Part 2

A mother's day message from a daughter, to all moms

mott blog - mother's day text imageThe role of a mother is simply irreplaceable to a child, and even more so when we find ourselves in the role of “patient.” At least that was the case for me during my illness.

Nearly 16 years ago, at the age of nine, I became ill with Lyme disease. It was a four to five year roller-coaster ride of doctors, tests, medications and constant “two steps forward and three back” scenarios.

My mom was with me through it all. She left her job to stay home and be my full-time caregiver during those years. For two years I was unable to walk, feed and care for myself in pretty much any way. My mom did whatever needed to help me survive. She got me up in the morning, made my meals, lifted me to and from my wheelchair, stretched out my muscles and much, much more.

She was the one who read verses to me to bring hope to my heart, prayed with me claiming healing, called friends to come over and bring joy to my heart, and pushed and encouraged me – even in tough love – to keep fighting and not give up.

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Prenatal exercise: Listen to your body

prenatal exerciseOne of the questions I ask all of my patients during their first trimester is if they currently exercise and what their plans are for prenatal exercise.

Exercise is vital to the health of a pregnant woman, not only for her physical health, but also for her mental well-being. The numerous benefits of exercise include helping to maintain your body weight during pregnancy and helping to prevent and control gestational diabetes. Exercise is also powerful in preventing depression.

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