ACPA Family Services

Cleft-Craniofacial Community Stories

The Sabo Family

My name is Misty Sabo. My husband and I have been blessed to have five wonderful children. Four of our children were born with either a cleft or a cleft lip and palate.

Our first son, Darryl, was born at only thirty one weeks. Because he had some other issues going on with his little life, we didn’t find out until he was three weeks old that he had a cleft. Here we were, first time parents, and we could not figure out why he had formula coming out of his nose when we fed him. When we called the nurse over to his bed, she walked away and got a doctor. To our surprise, we were told that Darryl had a cleft palate. WOW!!!! Darryl had feeding issues and required special bottles. At ten months old he had his repair and things were great – other than the ear infections. We were told this was common in cleft palate children.

One year later and pregnant with our second child, we were told at an ultrasound table that our little girl had a cleft lip and palate. Of course, like most mothers, my heart hurt a little. Destiny was born, and I had the hardest time feeding her.

At eleven months old she had her lip repair done. It killed me having to let her go in the surgery room without me there. Surgery lasted about an hour. When I finally saw her, a part of me was happy because the doctor did such a wonderful job, and then a part of me was sad. She looked so different. It was like meeting a new little girl.

At three years of age she was ready to have her palate fixed. At first, surgery when great. When she got out though, we found out that the palate did not hold. So now, Destiny is five years old, and one week from today we will be back in the operating room attempting to repair her palate.

My third pregnancy, and again we were facing the same thing. Now it didn’t bother me so much. However, what did hurt was wondering if the surgery would fail. I knew that my five year old had the hardest time trying to communicating with people because of her speech. I knew that hurt her, and I just did not want to see another child go through that. Trinity was born two months early. She had a rough start from the beginning. She would not take the bottle at all so we had no choice but to put in a feeding tube. She had her first lip repair at ten months old, and two hours after surgery she smiled so big it came all apart. When she was a year old the doctors tried again; however, this time she came out really sick, and we were not sure if she would make it. Because of the swelling of her body, her lip came apart again. At fifteen months the doctors suggested doing an Abbe Estlander Flap, also known as an Abbe Flap. This is where they take a part of the bottom lip and attach it to the top of her lip for blood flow. They then give it a couple of days and hope that this would close a part of the cleft lip. Well, again she got sick and it split open. Now she is just resting.

Trinity is two years old and has never eaten food. Because of the trauma that she has had around her mouth, she will not place or allow anyone else to place food in her mouth. So, she is still on a feeding tube, and while she is being fed by a tube we sit in front of Trinity to show her what food is and how it can be fun. Now she will actually lick on something. She is also dealing with a lot of other issues: a track, vp shunt, and dwarfism.

Samantha is out last child born with a cleft lip and palate. She is now six months old and had her lip repair at four months of age. She has to use a special bottle and nipple. However, she is doing great with this.

Her palate repair will take place sometime this year.
When I first heard of or saw a cleft lip and palate child, I didn’t know what to do. I love these kids, and I wouldn’t change a thing about any of them. I have noticed that cleft lip and palate children have an extra twinkle in their eyes.

– Misty Sabo, Colorado