When I was 20 weeks pregnant, my husband Matt and I had our first ultrasound. Afterward the doctor said he did not get a clear picture of the baby’s face. He encouraged me to go to the hospital to get a 3D ultrasound. I went to Conemaugh Hospital and met with Dr. Khouzami. I went to this appointment by myself because it sounded like everything was fine and my doctor just wanted to make sure he had a clear visual of the baby’s face. Dr. Khouzami did the 3D ultrasound and found that my baby had a bilateral cleft lip and palate. I was shocked! He did a full body scan at that point to make sure there were no other concerns. I regretted being alone at the appointment and was trying to absorb all the information I was given. Dr. Khouzami was amazing at explaining everything to me and answering my questions. He reassured me that our baby was healthy and that the ACPA Approved Team at Children’s Hospital of Pittsburgh would be able to help navigate the baby’s care.
My initial feelings were that I did something to cause this and now my baby would have to go through more than I could imagine. I was sad for a while as I tried to make sense of how this happened. I started doing a ton of research and reading testimonials from other families. ACPA’s resources were a huge help. The biggest thing that reassured me that everything was going to be okay was when we met with Matt Ford, Clinical Coordinator, at Children’s Hospital of Pittsburgh while I was still pregnant. He was so reassuring and explained the cleft journey to us, helping us to better understand what to expect after our baby was born. He also provided us with special bottles to have on hand once our baby was born to help with feeding since I would not be able to breastfeed. He told us to call once our baby was born and he would schedule an appointment that first week.
The first couple of weeks and months after Andrew was born were a whirlwind. We were back and forth to the hospital for many checkups. There were many sleepless nights. At one point he was losing weight as he was not getting enough milk. I fed him with a syringe to get his weight up while trying to get him to use the special bottle.
During his first year of life, he had three surgeries: lip adhesion, lip repair and palate repair. He says he does not remember any of it. I sure do! After Andrew’s lip repair I missed his little cleft smile. He looked different but was still my handsome man. At about three years old he had three laser treatments to reduce the scarring and redness. Last week Andrew had a Televex x-ray to look at his palate movement. It showed that there is too much air moving through his nose when he talks and that his soft palate is short. We have scheduled another surgery in June for a palate extension. We are hoping with the palate expanded he will get correct air flow and it will improve his speech.
I joined a parent-to-parent group to offer support to other parents currently going through the same experience of finding out they have a child with cleft and knowing they are not alone. All the feelings are so real! I want other families to know that they can talk to someone that will actually understand. When I was in the very beginning with a baby with a bilateral cleft lip and palate, I was reaching out to other parents that had been through it and I had so many questions. I wanted to be that parent to help other parents. It means so much to me!
Andrew is now six years old. We named him Andrew because it meant brave, strong, courageous and warrior. These words certainly describe him. Andrew is a happy, funny, loving kid. He loves playing with his friends, riding his quad, golfing, skiing and swimming. We are thankful that life has been pretty normal for him with his peers, school, etc. We have come a long way and still have more to come. Each step just makes us more and more grateful to all the specialists we have seen. Matt and I started making a monthly donation to ACPA in 2019. We wanted to help support the specialists that care for others like our Andrew. We want to help in any way that is needed.