When Kim went in for a prenatal ultrasound, doctors found her baby had a cleft lip and a heart defect.  “For the rest of the pregnancy, she had lots of appointments with echoes to make sure her heart was healthy and that she wasn’t going to die in utero,” Kim said.  After her daughter Jackie was born, doctors immediately believed that Jackie had CHARGE syndrome.

Navigating Daughter’s Medical Conditions Proved Tough for Parents

It ended up taking three months to get the genetic test results back.  While they waited, Jackie’s medical team ordered a series of other tests to be done.  Kim is a nurse and had never heard of CHARGE syndrome so she was overwhelmed by the number of tests being done on Jackie.

Within a few days, Jackie had a long list of impairments.  The ophthalmologist said Jackie had optic nerve damage in both eyes and she might be completely blind.  Audiology tests showed she was profoundly deaf in one ear and had mild hearing loss on the other side.  In addition to her heart defect and cleft lip she also had a cleft palate.  The cleft palate made it difficult for her to eat so she needed surgery to get a g-tube.  Lastly, they discovered she had hip dysplasia on her right side.  “It was hard to digest all of that information at one time,” Kim said.

Kim met with all of Jackie’s providers when it was time to leave the NICU.  She received a booklet about CHARGE syndrome.  In it were descriptions of the severity of impairments children with this diagnosis have.  The hardest part was knowing they would have to wait for Jackie to grow up to see where she fell on the spectrum.  “I felt like they were throwing all of this information at me but not supporting or comforting me,” Kim said.  She felt alone and scared.

Time and Outside Support Make it Less Scary

From the very beginning, extended family, friends, and neighbors have been extremely supportive of Kim.  Every time she needs help with Jackie or her other son, someone is there.  Kim knows there’s no way she could have done this without them.  “Jackie has had such an impact on so many people around us,” Kim said.

Jackie is now 19-months old and is doing better than Kim ever thought she would.  “She is happy, sweet, fun, and her personality is starting to come out,” Kim said.  Seeing her develop and do things doctors said she wouldn’t be able to do brings Kim and her husband lots of joy.

Words of Advice: It Will Change You for the Better

Kim will be the first to admit that this has not been an easy journey.  She never imagined her child would have a disorder like CHARGE syndrome but it has changed her for the better.  “We are amazed by Jackie every single day; the things she can do and the fight that she has,” Kim said.  Things will get easier with your child, you just need to hang in there until it does.

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