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Baby Jonathan's OI Page
Jonathan's Story

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Jonathan was born on March 8, 2000. He was 6 lbs. 5 oz. and 17 inches long. He was diagnosed with OI within 24 hours after birth.

This was my first pregnancy and everything had gone very smoothly. At my 20 week ultrasound we found out we were having a boy. He looked fine and healthy. The doctor made a comment that his femur was a little short, but still within a normal range. We just laughed and thought that he was already taking after his dad who has short legs.

At about 36 weeks we found out that the baby was breech and my amniotic fluid was very low. My amniotic fluid was monitored very closely for the next 2 weeks, until it got so low that they decided to do a c-section. Jonathan was born 15 days before his due date.

My C-section went well and I saw the doctor hold up the cutest little boy! My husband went with the nurses as they took Jonathan to clean him up and weigh and measure him. Right away one of the nurses realized that Jonathan was crying a sharp 'painful' cry. She called his pediatrician and told him to come look at the baby right away, rather than waiting until he did his normal rounds. Jonathan's ankle was a little bowed and because he was breech, with low fluid, they decided to x-ray his ankle thinking it might have a little fracture. The x-ray came back and showed that there was no fracture in the ankle, however, they found four healing fractures at other places in that leg--including his femur. They were shocked to discover this and x-rayed his entire body. They found a total of 7 fractures...4 in left leg, 1 in his right, a cracked rib, and his right arm that had been fractured immediately after birth.

Our pediatrician did not know what to think but was on the phone with specialists all that evening. Within about 10 hours after his birth we first heard the words Osteogenisis Imperfecta--and within 24 hours this diagnosis was confirmed. Because of the utero fractures he was diagnosed as Type III. (however 8 weeks later a doctor with considerable OI experience would tell us he was Type IV.)

We were all very shocked. We have no family history of OI and had never even heard of the disease before. None of the nurses in the hospital had heard of it either. We were scared, our whole family came together, and friends stayed up late into the night researching OI on the internet. They brought us printouts of what they found and I would read it in my hospital bed. It was confusing, and overwhelming and scary. But we knew that we loved this little baby with all our heart, and then some!

Jonathan was the second baby in 25 years to be born with Osteogenisis Imperfecta at that hospital. Our pediatrician was so helpful and put us in touch with a number of specialists. He even had a wonderful Occupational Therapist, Annie, who had a great deal of experience working with children with OI, come and visit us in the hospital the day after Jonathan was born.

I remember Annie saying, "Either keep him in your room, or take him home--but don't let him out of your sight. The nurses have no idea how careful they need to be." And she was right. She showed us how to change him--lifting him carefully under his bottom, and supporting his legs--it took 2 people to change his diaper. She showed us how to cut an egg crate foam mattress and we held him on that. I was able to breastfeed Jonathan--I would just put his foam mat on a number of pillows piled on my lap.

We went home four days after Jonathan was born. Annie was assigned to be Jonathan's Occupational Therapist through the local Early Intervention Program and has come to see us at least once a month since his birth.

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Here is Jonathan the day he was born.

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And baby makes three! Here is our first family picture.

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