My older sister, Joy Hales, wrote a small article for FORSYTH COUNTY LOCAL INTERAGENCY COORDINATING COUNCIL QUARTERLY NEWSLETTER.
My daughter, Corban, was born at 31 weeks gestation with multiple congenital anomalies. I was young, it was our first pregnancy and there was no expectation of a complication; so her early birth and numerous health problems were quite a shock. We were thrown into a world we had no idea existed. She stayed in Brenner’s for more than three months where we dealt with a whirlwind of doctors, nurses, insurance issues, surgeries, and medicines.
When we came home, there was a smooth transition from the social worker at the hospital to a wonderful case manager from what was then called the “BABIES” program. She was so dedicated to scheduling therapies; PT, OT, and speech; and finding appropriate toys Corban could benefit from. She truly made my life easier by contacting each therapist, having appointments scheduled conveniently, finding a PT who would come to my home, and preparing all of them for dealing with a tiny child connected to a huge ventilator. At the time, I did not know who or where to call for any of that or how to have it approved by my insurance. My case manager took that burden from me and I could concentrate on my daughter’s care and getting her to her appointments; which at the time averaged six a week.
When Corban was four years old, she was finally diagnosed as missing the tip of her tenth chromosome. It’s extremely rare so it doesn’t have a name, just an identifying location, 10q25.2 deletion. Corban is now nine years old and some things have gotten easier. Her health is still quite fragile when viewed by the general public, but she’s come a long way from the tracheotomy, oxygen, and home ventilator.
Those early days are just a blur now, but I do remember feeling well supported by the systems we have in place here in Forsyth County. I want to encourage those of you who work for the agencies involved in LICC to continue working hard for families! There are so many needs out there. And whether or not a family can truly appreciate your intervention at the time, one day they will recall it and recognize the mark you made in their life. I know that the focus of LICC is on children birth to five years old, but please realize that families continue to need support as their children get older. The acute issues may have passed, but the reality of raising a child that doesn’t fit neatly into society, begins to set in.
Dealing with the condition, whatever it may be, is no longer a sprint, but a marathon.