Tuesday, October 11, 2011

Spina Bifida Awareness Day 10

A friend of mine posted this article to our spina bifida group site. The article was written in 1981- I found it absolutely unbelievable that just 30 years ago children with spina bifida were left to die... Really???? They considered it to be a controversial issue to perform the life-saving surgery of closing the spinal cord. My thoughts immediately raced to how this relates to me personally. Bob was born 30 years ago (well a little more than 30 years ago...lol) What if he had been born with Spina bifida???? What if this were still the common practice??? Please read....
Our sweet baby just after his spinal closure surgery- Day 2

Day 4- What if he had not made it to the day that we saw his first sweet smiles??

Are 'Spina Bifida' Babies Best Left to Die?
Surgeon David McLone Challenges a Too-Common Practice

Michael Hummel was barely five hours old when he was rushed into an ambulance last December for a 55-mile trip from Woodstock, Ill. to Children's Memorial Hospital on Chicago's North Side. He was born with an incomplete spinal column, a condition known as spina bifida that is the most common crippler of children. It afflicts two of every 1,000 babies born in the U.S., and its complications—from mental retardation to paraplegia to urinary tract disorders—can be so devastating some doctors believe nature should be allowed to take its course. Often that means the infant dies within days. An operation, though it may save the child, can doom him to a life marred by handicaps.
Michael's parents did not hesitate in their decision. Their physician sought out Dr. David McLone, 43, the Children's Hospital neurosurgeon who is a leading proponent of spina bifida operations. "Don't give up on kids," he advises. "Don't write them off." For one thing, 30 percent of those left to die somehow survive and suffer especially cruel disabilities. McLone performs the surgery as soon as possible, preventing infection and further damage to the nervous system. Because of him, the Children's Hospital clinic has become a national center for spina bifida surgery and care, with 800 youngsters currently under treatment.
When Michael arrived at the clinic and was examined, McLone told the boy's father, Gerald, a telephone company maintenance man: "We think the problem is going to be minimal." Then, as one father (he has five children) to another, McLone added: "You've got a good-looking baby there."
The operation began at 4:01 a.m. with the surgeon first repairing the hole in the spinal cord. ("It is kind of like closing a book," he explains.) Then McLone sewed together layers of tissue and skin to cover the spine, whispering, "Michael, me boy, you'd better come together now." By 6:30 the operation was over.
Though Children's accepts even the most severe cases, the hospital's spina bifida mortality rate has dropped from 30 percent in 1974 to nine percent. "So many things can go wrong," McLone marvels, "and yet these little people escape and survive." When he moved to Children's six years ago to set up the clinic, he remembers, "I fought battles with my own staff. Some thought only 30 percent of these kids should be treated." Now, he says, the team "gets upset if a parent even vacillates."
Doctors who believe the operation is ill-advised criticize McLone for making parents optimistic. The children can learn to walk, but the majority need leg braces, and some 30 percent of the victims will be retarded. McLone contends that most of the condition's effects can be diminished. He says mental retardation is most often caused by treatment for another complication, water on the brain. He has found a better solution, installing a shunt in the head to drain the fluid to the abdomen. The retardation rate among McLone's patients is 10 percent.
As a Catholic, he opposes abortion "for any reason." But recently he urged the Food and Drug Administration to clear a pregnancy test that can reveal spina bifida in a fetus. These tests would allow parents to consciously choose to raise a spina bifida child and prepare for medical treatment before birth. "In 10 years or so," McLone says, "we should be able to operate on a child's back in utero, so that the child can be born with the defect already repaired."
McLone is a native of Flint, Mich. and, he notes, "the first male McLone who does not work for GM." His Irish immigrant father, his mother and six uncles all worked on the assembly line. A halfback in high school, McLone went to Ferris State College with an itch to play football, but after one season he decided tackling chemistry was more rewarding. He attended med school at the University of Michigan and earned a Ph.D. in neuroanatomy at Northwestern. He became interested in spina bifida as a resident, when a visiting lecturer advised denying these children treatment. "It sounded like Nazi Germany," he recalls.
McLone met his wife, Norene, now 42, back in the second grade, and they married in 1962. The family owns a townhouse four blocks from the hospital. Proximity is essential.
Phyllis Agness, of Fort Wayne, Ind., whose daughter Laura, 8, has been hospitalized 41 times and has had 20 operations, marvels: "You don't find many doctors who have such a personal involvement. We called last Christmas Eve because Laura had a shunt problem. When we got here that night, Dave was waiting to operate."

This baby was born with spina bifida and he was given a chance

He was not left to die.

He has never been a burden

We have never questioned our decision to have kept him

Rather we have watched him grow in wonder and gratefulness

He's our superhero

And a constant source of joy
Were so blessed!!!


  1. gives me goosebumps reading the article and nothign but joy looking at pictures of Carson!

  2. We are complete strangers but I just wanted to thank you for your blog. I found it a couple of months ago when I was searching the internet for info on SB. I wanted to learn more about it because my sis-in-law's baby was diagnosed with the condition when she was just a few months pregnant. My nephew was born last Wednesday and had his first surgery on Friday. Seems to be an odd coincidence that you're doing the Spina Bifida awareness posts right now :-)
    Just wanted to share!
    Thanks again!

  3. Karen, Thank you for sharing this! Your family is a blessing!

  4. Wow!!! Amazing. Gives you goosebuumps to think about. So thankful for our little Carson. He's so precious and cant hardly believe he's gonna be 2 next month. Praise the Lord! :-)

  5. Sweet daughter, what a blessing your blog has been to me! Keep up the good work and thanks for what you do to make us all more aware! Love you!!