ACPA Family Services

Cleft-Craniofacial Community Stories

Hope

Our daughter Hope fits her name perfectly.  She came into the world making her presence known and has continued to blossom into an independent, affectionate, and energetic girl!  Already in her life, she has given us, and so many others, a great deal of HOPE.  She has also taught us the lesson that some of life’s greatest gifts are the ones that come unexpected.

Hope’s story starts with her big brother Logan.  Logan has Cystic Fibrosis, which is a life threatening genetic disease.  Because of this, when we went to conceive Hope, we decided to use Invitro fertilization with genetic testing.  Little did we know that even after doing everything in our power to try to protect our second baby from the types of challenges Logan has to face, Hope was destined to be born with her own set of challenges and triumphs.

We found out at our 20 week ultrasound about Hope’s cleft.  Naturally we were devastated!  How could this happen?!  What did we do wrong?  How was our future daughter going to fit into a world that can be so superficial?  We cried and cried about all of the challenges our precious baby girl would have to endure just like her big brother.

Time passed and after the initial shock, we tried to educate ourselves about what we were in for.  What could we do to help our new baby have the best outcome?  We met with the nearest Children’s Hospital Cleft Team and were able to ask the many questions we had.  We read, went online, looked at pictures and tried to wrap our heads around what we would be facing.  We found that by finding out as much as possible and joining up with a team of specialists, we could better help our baby girl.

In addition to the plastic surgeon, we also teamed up with an orthodontist who specialized in helping children with clefts. Per her advice, we used the NAM device and taped our little baby’s face each night.  There were challenging moments in the process, but we kept thinking to ourselves that all the crying, or sometimes even pain would be worth it. Again, we wanted to do anything in our power to make sure she has the best outcome possible.

Now looking back, all of the uncertainty seems like a distant memory. The tears, long trips to the hospital, and tapings were definitely all worth it. We look at Hope today and see just that, HOPE!  We hope that she will give other families who are just starting to face the challenges of having a baby with a cleft lip and palate HOPE too.

We have learned through both of our children with special needs that life doesn’t always give us what we want, but sometimes it gives what we need. For families that are just starting their cleft journey, and to those who are continuing to soldier on through the challenges, don’t give up HOPE!