Madison R. - Quilt Finished in 2006

Born: January 2, 2003

Illness: Tetrology of Fallot (heart condition) and DiGeorge Syndrome (immune system condition)

Madison R.'s Story

written by mom Lisa

Madison was born on January 2nd, 2003, at 5 lbs 12 oz and 18 inches long. At the first listen to her chest the nurses took her to NICU because of a murmur. Several hours later they came to tell us that our new daughter had 4 defects in her heart that would require open-heart surgery. As suggested we took her home to grow, only she didn't.

At 3 weeks and now only 5 lbs Madison suffered congestive heart failure and was rushed to the Children’s hospital. After 5 days of “coding” Madison was taken to surgery in a sink or swim situation. They fixed her 4 defects called Tetrology of Fallot and she started her recovery. About this time we were made aware that she was void of a thymus gland (your immune system) and was being tested for DiGeorge sequence. DiGeorge is an immune system dysfunction that comes with another disorder called Velo-Cardio-Facial syndrome, which is recognized by a deletion in the 22 chromosome. It only took 24 hours for it to be confirmed that she had this affliction.

On day 4 of recovery Madison ran a fever and was labeled as “severely septic” with both a lung and blood infection. We were told that the 3 antibiotics were not helping and her lungs were too poor from being on heart-lung by pass to help. Her lungs collapsed several times and her body swelled to maximum capacity with infection. She was having blood and platelet infusion numerous times per day and soon even had adverse reactions to that. She was in a medically induced coma, on the ventilator and taking maximum dosage of narcotics for 3 months. At times even the ventilator couldn't help and she was put on an oscillator that pushed 300-350 tiny breaths into her lungs per minute! She wore earmuffs because it sounded like a jackhammer.

One amazing morning Madison decided she had enough and she started to get better. Her blood and lungs were taking longer to prove positive for infection and they were letting her wake up. Within 2 weeks we were put on the “cardiac step down unit”. It was that first day that they decided to let her eat for the first time in months. I fed her several ounces from a bottle and the rest went down an NG tube in her nose.  Within minutes Madison turned blue and wasn't moving.  She was resuscitated only to stop breathing several more times. We went back to ICU after only one day.  Five days later she under went stomach & esophagus surgery to reconstruct the damage that the ventilator did. It had blown her esophagus wide open and she was aspirating even her own saliva. Her stomach was tied off so that nothing could come up and a G-tube was put into her tummy so that we could feed her directly into her stomach with a feeding pump...We are still feeding that way today.

She remains on a host of prescription drugs to keep her blood pressure down, her kidney stones controlled, to aid in digestion, to keep fluid off her heart and help lung disease. She still does not eat or drink anything by mouth. Madison is averaging 1/2 the year, every year, admitted to Egleston Children’s hospital fighting blood and lung infections. She is very petite (not even on the growth chart) but continues to gain weight slowly. She goes to speech, physical, occupational therapy and special education several times per week. We see about 3 specialists per week (and that’s if nothing is wrong) and keep working toward our goals.

In 2005 she underwent surgery to repair her throat, ears, cleft palate, sinus and to insert a port in the wall of her chest.  We discovered a dimple in her spine (probable spina bifida) and that she has conductive hearing loss and progressive scoliosis.  We monitor her blood daily to keep control of her hypoglycemia and do IVIG (immunoglobin infusions) every 4 weeks.  She will spend this Fall being evaluated at the Marcus Institute for her developmental delays and she will continue to improve on her sign language, as she is still non-verbal.

Madison is a beautiful, bright and happy child and it is astounding that she is still with us. Our goal is to give Madison a better quality of life and hopefully a much longer one.

Written my Madison's mom Lisa in 2005