“A gorgeous baby boy!” said the doctor. All that jet black hair…tiny fingers and toes that were perfect… everything we had hoped for and more! Christian Peter, our first born, arrived on April 5, 1996 in Oregon City, Oregon, at 7:38 p.m., after an uneventful pregnancy and delivery. He was a delightful baby--extremely mellow and often sleeping. He gave his first cherished smile to his grandma on the day she flew home to Australia.
In the beginning Christian had great difficulty nursing and through our shear perseverance and determination he managed to continue nursing until he was nine months old. He continued to grow and fill our days with joy.
Two weeks after Christian was born we learned that he had a heart condition known as a PDA, patent ductus arteriosus. This small valve in the heart is supposed to close at birth. Christian’s had not closed.
The cardiologist explained that as long as the heart showed no signs of distress, he would give the valve a year to close on its own. If it hadn’t closed by then, he would have to close it surgically.
During our Christmas visit that year with my family in Australia, certain concerns arose about Christian’s development. Upon our return we asked Christian’s pediatrician if we could have genetic tests done to give us some answers.
One month before Christian’s first birthday he underwent heart surgery. One week before that we found out that our son is 49, XXXXY. We now understand that 15-20% of boys with this karyotype have cardiac defects; PDA is the most common.
They successfully closed the valve and our brave little boy with his cheery smile and peaceful disposition had a speedy recovery. He continues to astound the doctors with his progress.
The heart surgery was the best thing that ever happened to Christian, he has not looked back since. At eleven months of age he started physical therapy and within three months had learned to sit up on his own, crawl and pull to a stand. Christian’s weight gain, feeding issues and speech and language are all very involved, but at every turn he is making fantastic progress. A rigorous routine of private occupational, physical and speech therapy as well as early intervention services from the local school district keeps all of us extremely busy.
Christian’s self motivation, stubbornness and persistent disposition makes parenting a trial but have there obvious payoffs in terms of his triumphs and accomplishments.
Christian is almost two. Every day we marvel at our wonderful little boy. He is not walking yet but that is not far off. He is learning to sign, which is helping his vocalization. His social skills are well above his age and his cognitive ability appears only to be slightly behind at this point.
He is constantly teaching us about the things that really matter in this life--love and laughter, determination and strength. We are truly blessed to have him in our lives.
Story submitted by: Jennifer Cavarno, mother
Published in “The 49er Banner” May 1998
As a note of interest this was recently shared with me in a bible study group,
We should not pray to lighten the burden of the cross we are given but pray to have the strength to carry that cross.
