Our darling daughter, Lilliann June, was nine days past her due date when she was born on September 25, 2013. It was a long labor — 48 hours — but well worth the wait. While we were in the hospital, Ryan noticed that her left eye was red. The pediatrician wasn’t alarmed, but had the hospital’s ophthalmologist take a look. He mentioned that she may have an issue with cataracts and glaucoma. We’d only heard those words used for older people, so we didn’t pay too much attention, until we were referred to another ophthalmologist for further examination.
Chad Gruber was hoping to quarterback his football team at Reese High School his senior year. Instead, he found himself facing his toughest opponent yet: cancer.
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.
This 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.
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.
We first learned about Darren’s situation in March of 2012. He was three years old and living in an orphanage in Shenzhen City, China. He’d been found as an infant in a local hospital waiting room with a note presumably from his birth parents indicating his birth date and that “We hope the kind people can help him.”
It was discovered that he had multiple congenital heart defects. They were able to diagnose the problems in his region of China but couldn’t treat them due to the complexities. It was determined that he had a very short life expectancy without surgical intervention.