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Cleft-Craniofacial Community Stories

Danielle’s Story

The day we found out we were pregnant with our second little love our hearts were filled with joy!  We wanted a second baby so badly and were thrilled to see that God had blessed our lives so quickly after our first. It wasn’t long after those two pink lines came across that little test that my pregnancy started to become difficult. Early in my pregnancy I knew deep down inside that something was wrong with the baby.  I just had a gut feeling that I couldn’t shake.  After our anatomy scan we walked away knowing that we were going to have another girl! Everything so far looked healthy, but another ultrasound was needed because the baby wouldn’t cooperate. She was in a position that inhibited the technician from seeing everything. For some reason I couldn’t stop crying after that ultrasound.  I would weep and tell my husband Dale that they missed something.  I just knew.  Looking back, I feel that God was trying to prepare me for what was in store for our lives.

Then it happened: the phone call every pregnant woman dreads, when my OBGYN called to inform me that a cleft lip was discovered on the baby’s ultrasound. I don’t think I’ve ever felt such devastation. I cried, I lay in a ball on the bed, I yelled, I prayed, and I fell silent with a loss of words. That phone call changed our lives and our future. From that moment forward we started to experience the trials of having a child with a cleft.

We prepared as much as we could for our new daughter.  We had genetic counseling meetings and conferences with the craniofacial team at Seattle Children’s Hospital. We started obtaining information about the many challenges that face a baby with a cleft, from feeding difficulties to speech problems, as well as numerous surgeries. It was overwhelming and terrifying, as the unknown many times is.

Danielle Maleah was born on December 27, 2010, and that day our future was revealed in all its magnitude.  Danielle was born with an asymmetrical bilateral cleft lip and palate, a diagnosis more severe than we were anticipating. She was split from her nose to the back of her throat. The cleft was considered severe and measured a whopping 15mm.

Just two weeks after her birth, our journey with Seattle Children’s Hospital began with a long appointment where we met with Danielle’s surgeon, orthodontist, pediatrician, nutritionist, and nursing staff.  We began taping her face and she was fitted for a NAM (naso-alveolar mold), a small retainer that would be used to move the tissues and decrease the severity of the cleft prior to surgery.  The next five months we battled through weekly doctor appointments, mouth sores, pain, and crying.  Danielle was diagnosed with reflux and colic resulting from swallowing too much air through her cleft.  It was a fight to get her to eat, and at times she would cry for days.

Dale and I decided at the beginning that we would never give up.  No matter how hard it was, we never left out her NAM.  We were diligent with her treatment, regardless of the tears.  We knew all of it was for her benefit and even though it was difficult to put her through, we knew we were giving her the best future possible and it would be worth it one day.

At five months old Danielle had her first surgery to close her cleft lip. Seeing Danielle for the first time after surgery was overwhelming.  She was beautiful and perfect in every way. The surgeon did a better job than we ever expected. Then at 11 months old, Danielle had her palate closed surgically.  The recovery from both surgeries took some time. With each one, not only did the look of our daughter change but so did her personality.  She was happy, relaxed, relieved of any pain, more social, and we were quickly able to settle into our ‘new’ normal.

Future surgeries to fix Danielle’s gum line and nose are years out, and she has no residual effects on her hearing or speech.  We have a beautiful daughter, inside and out, whose smile could melt the hardest of hearts.

You can see Danielle’s journey in detail on our blog and in our slideshow.