ACPA Family Services

Cleft-Craniofacial Community Stories

Jennifer Balistreri’s Story

My husband Mark and I had been married for six months when we found out I was pregnant. We were elated! I really wanted a girl, but ultimately I just wanted the baby to be healthy. At 20 weeks, I had my first real ultrasound. They did the normal checking of limbs, organs, heartbeat, and then gender…A GIRL!!! Then the technician tried to get a 3-D view of the baby’s face, but it was difficult since the baby was moving so much. After trying for 15 minutes to get a good view of her face, I asked why that was so important. The tech told me that she suspected that the baby had a cleft lip. I was devastated, heartbroken, scared, panicked and about 1000 other feelings in a matter of seconds. The diagnosis was confirmed, and I saw it as plain as day…she had a cleft lip.

I barely made it out of the office and just cried like I had never cried before. How could this have happened? Why me? Why my child? Then I wondered what she would look like and whether she would have a normal life. I called my mother, who assured me that everything would be alright. I called my dad, and he told me to stop my crying because the cleft was fixable. That was just the beginning of the support I have received from family members and friends.

I really didn’t know what a baby with a cleft lip looked like, so I went to the internet. What I saw there didn’t help or comfort me, but rather scared me. I had so many emotions in the next 17 weeks of being pregnant. How could I explain to my little nieces and nephews what was “wrong” with their cousin? But eventually they surprised me with how loving and supportive they were, even at their tender young age.

On Super Bowl Sunday, I was admitted to the hospital for high blood pressure. Emily Louise Balistreri came into the world via emergency C-section on January 29, 2003, 12:20pm, weighing in at 5 pounds, 9 ounces and 19.5 inches long. The first thing my husband said to me after she was born was “She has her palate.” What a relief! When they laid her on my chest, I told my daughter, “You don’t look bad at all!” I knew then that she would be okay. The unknown is so scary, but as soon as she was born, I wasn’t scared anymore. I could hold her and look at her and learn so much from her. My husband admitted that he was shocked when she was born, though, so we were glad we knew about her cleft ahead of time.

The next three months were challenging. We had to have a nurse visit three times a week because of how small Emily was at birth. Eventually she was also diagnosed with Acid Reflux Disease, or GERD (Gastro Esophageal Reflux Disease). She gained weight slowly, but she had to weigh 10 pounds to have surgery. Finally we made it!

Surgery was the worst feeling for my husband and me. It was so hard to let our daughter go, knowing she wouldn’t look the same ever again. The surgery took a little over two hours. When I saw her afterwards, I was amazed at how different she looked. I almost didn’t like it, because I missed her “normal” look. She did well and was able to eat from a bottle the next day. Within two weeks of the surgery, she had gained almost 4 pounds! She was doing well.

I asked my little nephew what he thought of her “new face,” and he said, “I liked her the old way, but I like this face much better!” I thought it was very sweet and sincere. We haven’t had bad experiences with people judging her or making rude comments. People look because they are curious, and I just volunteer the knowledge I have. My husband I was proud to show her off! We take her everywhere.

Emily will have to have several more surgeries in the future, including a nasal revision and a bone graft. We feel so lucky to have been blessed with this beautiful, perfect child. We wouldn’t trade this experience for anything in the world. She has taught us so much in the short time she has been here, and that wouldn’t have happened if she hadn’t been born with this special mark. (I don’t like to call it a birth defect because that sounds so negative.) God made her special, and she is just that!

Now that Emily is a year old, she is SO MUCH FUN! She is the most important thing in our lives, the reason we get up in the morning. She is crawling and is a healthy 19 pounds. She worked hard for that! She laughs, giggles, talks, and loves her daddy! Had we known that she would bring us this much joy and love, we wouldn’t have worried so much about her being born “different.” Most people can’t even tell she had a cleft lip until I tell them.

We have learned so much about cleft lip and palate, and it is a wonderful feeling to educate people and share our experiences. It is a comfort to remember that I did everything right during my pregnancy. Her cleft wasn’t my fault. It wasn’t my husband’s fault. It just happened. We needed to have a baby who wasn’t “perfect” from other people’s perspective, but she was just that for us….PERFECT!!!

Last Updated: Jul 24, 2006