• Home »
• Case Studies »
• Julianna

Julianna

Our journey started when our daughter, Julianna, was born on Friday, August 16, 2002 at Hamot Medical Center. We were the proud parents of a beautiful baby girl and at first glance, you couldn't tell that there was a problem with her.

In the nursery that night, the nurses found a cleft in her soft palate. The nurses notified the doctor and I was told about the cleft on Saturday morning. The doctor assured me that she would be fine. Although, as a mother I wondered what I had done to cause the problem in my baby.

When Monday came, I got a visit from Nancy Root of the Cleft Palate Institute. This was a welcome visit, as I was having trouble getting Julianna to eat. Because of her cleft, she was unable to nurse and she was also having problems drinking from a bottle. Later that morning, I got a visit from MJ Giacomelli who helped me with her feeding issues. We both went home from the hospital that afternoon.

When Julianna was a month old, she went to her first Cleft Palate Clinic. She was born weighing 6 lbs. 6 oz., and at a month old only weighed 7 lbs. She was struggling to eat. It took her 30-45 minutes to eat a couple of ounces. It was decided to change over to the Haberman Bottle. This bottle was great. Julianna finally took off and began to gain weight. This made for a much happier baby, as she was no longer struggling to eat.

When Julianna was two months old, she stopped responding to us and quit smiling. We took her to Hamot for a hearing test. She was unresponsive, and our doctor sent us to an ENT. We had an awful time with ear infections. Each time she got over one, another would come, and this went on from October 2002 to February 2003. After an unsuccessful consultation and seeking a second opinion based on Dr. Forcucci`s advice, Julianna finally had tubes placed in her ears in February of 2003. My baby could finally hear me again and became her bubbly self.

In March of 2003, we made another trip to the Cleft Palate Clinic. Dr. Garcia felt that it was time to repair her cleft and we set the date for April 17h. At that clinic visit, there was concern over some developmental delays. We were asked to consider services and called the Achievement Center. It was decided that services would start after Julianna's surgery was completed.

We arrived at Hamot for her surgery and got her ready. In preop, I rocked Julianna until it was time to hand her over to the OR staff. As we waited, my mind was reeling at the thought of her in surgery. The waiting was the worst part. Finally, Dr. Garcia came out to let us know everything went fine. Later that day, I found myself standing at her crib crying right along with her. I felt that I had caused her the pain she was in. They wanted her to stay in the mist tent and I wanted to hold her. We had trouble getting her to drink fluids, and finally had success using a soft cleft palate nipple.

We started speech therapy after Julianna had healed. We had a great therapist from the Achievement Center who would attend clinic with us to report on her progress.

Julianna has since been involved with the IU TLC Class and is currently in the Albion Headstart program. She also sees MJ for speech therapy at Hamot. At four years old, she has come a long way since she was born.

As she grows older, I still worry about how she will do in school. She will be going back to clinic and I'm hoping to find out what more I can do for her and when. I have finally come to terms with her cleft. I know it was not my fault and I didn't do anything while I was pregnant to cause her cleft (as Dr. Garcia told me from the beginning). As a mother, it has taken me a long time to truly believe I didn't cause it.

As a family, we have gone through a lot of ups and downs, but we have come through it and will be strong and supportive for Julianna in all she does.

We would like to thank all the people (past and present) at the Cleft Palate Institute who have helped us tremendously and care greatly for all of our children. You are the best of the best and we thank you. Thank you doesn't even come close to how we feel with all you have done for our little girl and countless others.

Edward, JoAnna, Grant and Julianna
The States Family