Learn about the Children and their families. We will be featuring different stories from different perspectives to present the life of a medically fragile child. Thank you to all the families for sharing their stories with us!

"Jadebug", One of God's little masterpieces

When I first learned I was going to be a grandmother a whole world of thoughts, emotions, dreams and fears went through my mind, but nothing I dreamed or prayed for prepared me for what was about to come to be.

We learned at about 5 months of pregnancy the baby was a girl. We dreamed of perfect 10’s and Olympic gold, scholarships and fame. We saw the world through rose colored glasses. Everything was fine as far as we knew.

The day Jade was born our entire lives changed. I remember thinking to myself while looking at this baby who was bu seconds old, “Where is her chin?” The nurse rushed her out o the delivery room in under 5 minutes, saying she was taking he to the nursery for a “little oxygen”. Soon after that we were told pediatrician was called to come and see her for a “little breathin problem”, next came the anesthesiologist. I called my minister

Suddenly she was transferred to South Bend to the NICU. Then the NICU doctor dropped the bomb. There was a problem. A genetic disease called Pierre Robin Syndrome was diagnosed. It causes facial bone abnormalities. A small chin, a cleft palate, flattened nasal bone, low set ears, and palm creases. With a normal sized tongue there wasn’t enough room for it to lie flat, so it fell back and obstructed the airway. Next she was unable to suck on a nipple or swallow. A G-tube was put in at 3 weeks of age, but they were unable to maintain an airway or “intubate” her (place a tube in the mouth to protect and maintain an airway while in surgery). Five more weeks passed with airway struggles before we were convinced she must have a tracheotomy to survive while she grew. Before she arrived home at 11 ½ weeks we were told there was the possibility of another genetic disease called Strickler Syndrome. As a nurse of 20 years, I was terrified. I thought if I’m so afraid how must my daughter who is not a nurse feel? I was afraid I would not know if she needed anything since she couldn’t make crying sound like other babies. I was afraid to leave her side for fear she would stop breathing. After six more weeks she came home from the hospital with a vent, monitors, alarms, feeding pump, suction machine, and nurses.

Taking Jade anywhere other than to the doctors office or church was an exhausting endeavor. Each time you went anywhere you would have to break down and load her custom wheelchair add the travel vent, marine battery, suction machine, IV pole, feeding pump and rescue bag with extra trachs, G-tube, ambu bag, dressings, tape, syringes and a diaper bag plus someone had to sit beside her for constant care and monitoring. Then once you got to where you were going you had to do it all over again.

Jade remained on the vent for a year. During that year she was in and out of PICU often wit pneumonia and various infections. After a year her cleft palate was repaired. An hour afte surgery the nurses told me they took Jade off the vent. I panicked. “Put her back on!” I said, “She needs it”, “No” they said. Dr. Oakalami appeared and said, “She doesn’t need it any longer She’s able to breath by herself now.” All I could do was cry and silently pray she was right

Six weeks after coming off the vent Jade started walking. But for months I would sit and watch the speech and occupational therapists try to get Jade to take a bite, just a bite of anything. They worked so hard to try to get her to swallow. Sometimes Jade cried and choked the whole time. Sometimes I cried, into the pillow, the whole time. I remember her first word. On May 2, 2000 she said, “Mama”, as I was listening to a doctor at a hospital telling me over the phone that my father had just died.

For all she has been through she is a very amazing little girl. I don’t know any other 6 year olds who can explain trachs, g-tubes and PICC lines in such great detail and what they are for. For now things are stable for her. She eats by mouth; she walks runs and plays. She wears glasses, (when she doesn’t hide them), and she was special ankle supports, (which she also hides), a typical 6 year old. She has a whole host of specialists she sees regularly. Jade has doctors for pulmonary, orthopedics, ENT, ophthalmology, plastic surgery, dental, gastrointestinal plus her regular pediatrician to hold it all together. We watch her like mother tigers over their cubs. We make sure her environment is safe, no seizures or breathing trouble is going on. Jade often asks if it is an ozone action day or not because she can’t go out to play if it is?

Through it all there is a very smart, lovable, cute little imp we call Jadebug who steals the hearts of all she meets and we love her dearly.