Understanding My Daughter's Dwarfism

Abigail's Arrival

Abigail Louise came into the world on February 4, 2000. From the start we accepted her, as did our friends and family. Her appearance was a little shocking at first, mainly because we didn't know what to expect. We knew that she would have short limbs but we were surprised by the size and height of her head. But despite such surprises, she was met with loving, open arms.

Unfortunately, Abigail still had some medical battles to face. At Alfred I. duPont Hospital in Wilmington, Delaware, we leaned that Abby also had coronal craniosynostosis, a completely unrelated but far more dire health issue than achondroplasia. Craniosynostosis is a condition in which the openings of the skull close prematurely. If left untreated, it can cause brain damage. Abby would need neurosurgery, plastic surgery, and a special craniofacial team to treat this illness.

But a week before her operation, the experts at duPont said they couldn't do it. Abigail's case was too complex. Too complex for the experts? How could that be?

Fortunately, we found some doctors at Yale-New Haven Hospital's Craniofacial Clinic who were willing to take us on. Abby's skull would need to be completely reconstructed -- a challenging and difficult surgery. On the day of her operation, we watched as our 7-month-old daughter was wheeled away from us on a gurney.

It was excruciating, as were the six hours we spent in the waiting room, numbly thumbing through magazines and anxiously awaiting updates from the nurses. But our little girl came out of it with a new, improved skull and, most important, plenty of room for her brain to grow.

Parents Are Talking

Add a Comment