The Story of Madeline Kate

In March, 2008, our lives took a drastic turn we did not see coming. Laying on the table in the ultrasound room, so eager to find out if our newest edition was a boy or a girl, the air changed and the technician said that she needed to find the doctor. I knew something was very wrong. All I heard in the following brief explanation was "fluid on the brain, spinal and lower extremity abnormalities." The first in the list left us wondering if our little one would survive past birth.

With the shock came tears and oddly enough, praise. "Lord, You are good and Your mercies endure forever" was the song that played over and over in my head. I even sang it aloud on the way to see Dr. Tuchscherer, our family physician, who comforted us and encouraged us ("Of any of my patients, I know you can handle this.")

The next day with the help of a level 2 sonogram, a kind technician, outstanding physician from the St. Vincent Center for Prenatal Diagnosis, and a knowledgeable geneticist, we found that our little one (a girl!) would most likely live and thrive, though from a wheelchair. In utero diagnosis was myelomeningocele (T10 or T12 through the S1), aka spina bifida, hydrocephalus, and clubbed feet.

We felt like we were on cloud nine, having gone from immense sadness to great hope. And so began our amazing journey into the world of special needs parenting. We've learned a lot along the way, and we've been incredibly blessed to have the incredible support of our family, church family, and friends all across the country. 

Madeline Kate's list of diagnoses:
  • DiGeorge Syndrome (causing the SB and other factors)
  • Myelomeningocele (causing complete paralysis from at least the belly-button down)
  • Hydrocephalus (shunted--VP shunt)
  • Clubbed feet, corrected
  • Vesicoureteral reflux, relieved somewhat by vesicostomy
  • Chronic lung disease (on 24/7 oxygen, 0.5 l)
  • Neurogenic bowel and bladder
  • Severe curve, called a kyphosis, corrected with kyphectomy and rods at age 2
  • Hip subluxation
  • Dysphagia (causing aspiration, necessitating feeding tube for thin liquids)
  • Seizure disorder (resolved with Keppra)
  • Sleep apnea
  • Spontaneous oxygen desaturation
  • Horseshoe kidney
  • GERD (helped with Nissen fundoplication)
Madeline currently receives four therapy sessions per week. She is making strides by leaps and bounds. She can now sit independently, roll over quickly, push into extended forearms for longer periods of time, sit up from laying down, and pull herself along ("crawling"). She signs quite a bit but only babbles and says "Dada."

Below are links to important milestones in Madeline's life. Updated June 1, 2011

The day we "found out"
Official in utero diagnosis
Surgery at two days old--Shunt placement and myelomeningocele repair
Surgery 2--Shunt revision
Surgery 3--Brain-stem decompression (see the next three posts for more info and pics)
Surgery 4, a 5-in-1: ear tubes, Nissen, G-tube, vesicostomy, bilateral clubbed foot correction). Check the next posts for further updates
Surgery 5--Kyphectomy Type III with instrumentation