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Ariana at one year
A Story of Hope
I desire to reach out to someone who feels alone in the pain and uncertainty of having a child diagnosed prenatally with a cleft lip and/or cleft palate. As a mother of a daughter born with a cleft lip, I remember feeling as if my world was crashing in around me. The pain was unbelievable, and I began to question things. What had I done? Why did my child need to go through this? How would I make it through? These and many more questions went through my mind. I couldn’t find peace anywhere and walked in a daze not knowing what the future held.
Two days after birth
I was going in for a routine anatomy scan to find out what I was feeling inside of me, a boy or a girl. I never once thought anything would be wrong with our baby. As I lay on the examination table I grew more and more excited to finally find out…we were going to have a girl! I immediately called my husband and he was also overjoyed. The technician left the room and within time returned with the most devastating news. Our daughter had three apparent complications: a cleft lip (possible cleft palate), stunted legs with a larger head, and hydronephrosis, a condition in which the kidneys back up. I was blown away and barely said a word. Fortunately, my mother and father were with me, but even their presence became a blur when the medical staff explained that our child had a good chance of having a genetic or chromosomal disorder. It was more than a mother could bear…I needed someone to lean on, but not even my husband’s shoulder was big enough. I needed someone larger than life itself. That’s when I turned to God. In doing this, I gained a peace that allowed me to accept whatever would lie ahead.
Ariana at one month
Many of you may not be believers and so you may think this story doesn’t apply to your particular situation, but I believe it does. I believe that when we face pain beyond what we can handle, there is only one who can help us. I have faith that God can turn a sad and devastating event into the most precious and peace-instilling. I knew that God would be with me and that He would give me the strength and love needed to care for my baby, regardless of the outcome.
Our prayers were answered when we were told that our baby’s stunted legs had lengthened and that her hydronephrosis was gone. Further, an amniocentesis revealed she would not have any known genetic or chromosomal disorder. We were so overcome with happiness and felt our prayers had truly been heard. Ariana had surgery to repair her cleft at three months.
Three months old, one week after surgery
Another set of challenges arose after Ariana’s surgery as she developed an oral aversion. We spent nine grueling months of trying to feed her. We didn’t know it then, but found out that her aversion was caused by monthly injections administered after surgery to diminish scarring. We went through a different kind of trial those nine months—having a child who refused to take any nutrition by mouth. We narrowly avoided hospital admissions for dehydration and were close to inserting a feeding tube as her weight steadily declined. Her oral aversion progressed to the point where we could only feed her during the early stages of sleep. My entire day became consumed with how I could get in enough liquids/nutrition. The stress and pressure I put on myself placed a strain on my physical health and relationships with those I love. I eventually reached a breaking point where I could no longer continue on my current course. How quickly I had forgotten the one who had given me peace during my pregnancy. As I regained focus on God, healing came to my daughter, my physical health was restored, my relationships were mended, and I felt a joy and appreciation for life I’d never experienced before. Now I consider each day a gift and cherish each moment with my daughter who is a constant reminder of God’s goodness and faithfulness.
Ariana at fifteen months, one year after surgery
If I can be of any encouragement, please do not hesitate to email me firstname.lastname@example.org. I am more than happy to lend an ear to your uncertainties and pray for you and your child.
Last Updated: Dec 9, 2008