Mitchell's Golden Birthday: February 2012

Friday, February 24, 2012

Mitch will be 27 on the 27th of February!

Please feel free to write a birthday message at the guestbook link below!

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Please keep checking back. More of Mitch's story and photos will be added in the coming days.

Sunday, February 19, 2012

Mitch's Birth | February 27, 1985

This was the first time I was able to hold Mitch. He was
over 3 weeks old. Even at this young age, he was already
a Wisconsin sports fan.

Mitch was born on a cold February day at a small primary care hospital in Southwest Wisconsin.

Even though I had prenatal testing, we did not know anything was wrong until he was born. The delivery room was full of people, noise, and movement. I had been pushing for over an hour when finally he was delivered and suddenly, a hush fell over the room as though a switch was flipped. Mitch was born with a birth defect called spina bifida.

Spina bifida occurs within the first four weeks of pregnancy, before many women are aware that they are pregnant. For some unexplained reason, the embryo's neural tube (which develops into the brain, spinal cord, and vertebral column) fails to form properly, which results in varying degrees of permanent damage to the spinal column and the nervous system.

In the United States, approximately 1,500 infants are born with spina bifida each year.The level of involvement relates to the size and location of the defect along the spinal column. Seventy-five percent of children who are born with spina bifida will have a lumbar-sacral level defect, which are the lower areas of the spinal column. Twenty-five percent of children will have defects in the thoracic or the upper thoracic-cervical region. The defect may be limited to one vertebra, or, it may involve several vertebrae.

Mitch's lesion started at T2 (just below his neck) and ran to this sacrum (the lowest part of the spinal cord). We were told few infants born with lesions as high and as large as Mitch's rarely lived beyond the first few years of life. We were so lucky to have such a dedicated team of people caring for him.

Saturday, February 18, 2012

First Year

From behind the wall of an incubator, I saw Mitch for only a few minutes before the special neonatal ambulance whisked him away to St Mary's hospital in Madison. The next morning, when I finally got to St Mary's, I saw him once before the neurosurgeon operated to close the open lesion on his back. He was laid on a pillow on my lap. When the nurse pulled back the sterile dressing to show me his back, I felt faint. Seventy-five percent of his back was an open, oozing wound. The edges of incomplete vertebra, a half-formed spinal cord, blood vessels, muscle, tendon and ligaments were visible. What a shocking thing for a twenty-two year old new Mom to see. I could not image how the surgeon would ever find enough skin to close such a huge lesion. But his extraordinary neurosurgeon, Dr. Woodford was able to do so during a 6 hour in surgery.

In the NICU (neonatal intensive care unit), despite the dire predictions, he seemed amazingly healthy. At 8 pounds, 4 ounces, he weighed more than his 3 room mates combined. Those poor preemies, with their immature nervous systems, startled, quaked, and cried much of the time. Mitch was like a little Buddha, his cheeks plumped from the butterfly IV in his scalp, his gaze calm and interested, his bed an island of serenity in a sea of irritable, unsettled babies.


Cool wash cloths were used frequently to try to lower his fever which ran as high as 106F.

Like many babies with spina bifida, Mitch developed hydrocephalus and had a shunt placed at 13 days to drain the excess fluid from his brain. Before a dad named John Holter invented the first working shunt, most babies with spina bifida and hydrocephalus died from untreated hydrocephalus. Read more about the Holter shunt and the amazing story behind it at these links:

When Mitch was 3 1/2 weeks hold, he was released from the hospital. He was home two days before we had to rush him back to the hospital to have his shunt replaced. It became clogged with protein. Between shunt replacements, ear tubes, a hernia repair, tendon surgery, and mysterious illness marked by a high daily fever, Mitch spent much for the first year of his life in the hospital. Many of the nurses became good friends.

This is a star car - Mitch used it for several years. It allowed
him to play at floor level and move independently.

For children with physical disabilities, mobility equipment and devices allow them to explore their world in the same way as children who are typically developing. My parents made him a scooter board - this allowed him to pull himself around using his arms.


This is Mitch in a device called an Orlau swivel walker. Even though he never walked, this allowed him to bear weight on his bones, helping them grow strong.

Mitch's first wheelchair. He was 18 months old. His
hands can't reach the wheels to push himself. Today
there are many more options for little ones who need
mobility help.

Friday, February 17, 2012

In his stander, blowing bubbles with Paula, his early
intervention teacher.

Hanging with his buddy, Danny.

Thursday, February 16, 2012

Mitch was lucky to have a private duty nurse named Tura
who took such good care of him while I was in school. These
are some of the many photos Tura took of him.

Halloween at the hospital. By the time Mitch was 3,
he had undergone 2 dozen surgeries and over 100
hospital admissions. A few years ago, he had his 51st surgery. This is not uncommon in people who have spina bifida - many youngsters with spina bifida have undergone many more. One young man we met had 70 shunt surgeries in two years.

When Mitch turned 3, he transitioned from his Early Intervention Program to an Early Childhood Program at Prairie View School outside of Darlington, WI. Mrs. Annie was his teacher and Mrs. Friscke was her assistant. Mitch loved going to school and spending time with friends.