This Month's Featured Family!
February 2005
Bryttani
Cleft Lip/Palate, Missing Nasal Structure,
Coloboma, Multiple Anomalies
Delaware
Hello, my name is Casey. I am now 25 years old, wife to Marcel (29yrs old) and mom to Bryttani (5yrs). We live in central Delaware.
I was 19 when I was pregnant with Bryttani. During my first ultrasound at around 20 weeks, my doctor saw that Bryttani would have a cleft lip/palate. He sent us to have a level 2 sonogram done.
During the level 2 sonogram, the doctor there verified that the baby would have a cleft. They could not tell, at that point, which way the cleft went or how severe it was. The doctor stated that by State of Delaware law, they can only legally offer termination up to 24 weeks and I had turned 25 weeks that day. Marcel and I both replied that we wouldn't go that way anyway.
However, the doctor (who was a female) stressed termination about a dozen times. Our responses never changed. Finally I got so aggrevated with her that I went off. They did an amnio that day. They told us very bluntly that we had no way of knowing "how the baby will be". They went from her being perfectly healthy to her being stillborn. Every sonogram after that (there were about 7 to follow) they detected another "problem".
I went into labor a month and a day before I was due. I had approximately 15 people in the delivery room, a specialist in everything for Bryttani and extra staff to help with the delivery and any problems that could happen. The delivery was normal, no problems.
Bryttani was screaming at the top of her lungs immediately. They took her off to the side to check her out and clean her up, but we did get to hold her.
She was born with a severe cleft lip and palate. The cleft extended through her nasal structure (which is completely absent). She has a little stub of tissue in between her eyes. She is missing her left eye and has a coloboma in her right eye. All of her organs are on the opposite sides. She did go to the NICU, where she stayed for 10 days.
I delivered on a Tuesday; they waited until Friday to try to feed her, which they did by putting a tube down her throat. When I went in that Saturday, the tube was disconnected and they were bottle feeding her with a Habermen feeder. They waited those few days because they did not think that she would survive. They didn't see how she could breathe without having any nasal structure. They also didn't think that she would be able to even tolerate any kind of feeding, whether bottle or tube.
She did wonderful with the bottle. The doctors still insisted that she would die either of aspiration while she ate or suffocation. They also insisted that she was totally blind and deaf, too.
The doctors told me that she could come home the next day, which was my birthday; but when I got there they said that they wanted to wait another day or two because she was still so small. The next day the doctor discharged her, but did so against his will because he felt there wasn't anything they could do there that I couldn't do at home. He thought she would die.
We had a nurse come twice a week for about three weeks to weigh her and make sure she was doing fine. I asked the nurse if there was any kind of day care that might take her as I had no choice but to go back to work. She told me about PPEC (Prescribed Pediatric Extended Care). I checked into that and Bryttani started there at 7-1/2 weeks old. What the PPEC is, is a therapy center for special needs children. They hate being refered to as a daycare because they are so much more than that. They are staffed by nurses and aides that take care of the children. They have an early childhood educator and every kind of therapy a child needs. If they don't have a service already there, they will get it for a child. Bryttani attended just shy of 5 yrs. We were very blessed to have them as they helped us in every way.
Bryttani will turn 6 at the end of September. She is starting Kindergarten. She has done better than anyone expected, ourselves included. She has had five surgeries to date; first was lip repair, second was palate repair; third was opthomology procedure, fourth was tonsils removed, fifth was another opthomolgy. She still has many more to go.
Bryttani has a prosthetic eye for her left eye. Since she has the coloboma (underdeveloped) in the bottom of her right eye, she is legally blind. However, she does have vision and gets around as well as I do with two eyes. All of her organs function properly despite them being on the opposite sides. She does have asthma and reflux; but they run in the family.
Now, I will tell you that during my pregnancy, I was basically alone. Marcel and I were together, but not married. We are of two different races. So when I told my mother I was pregnant, much to my surprise she told me she was dead (my mom raised us better than that). At that time, my parents had been divorced for about 18 years and my mom lived in Baltimore an hour-and-a-half away from me. But it still really hurt. I didn't have her to go to for advice or to ask questions.
My father drove a truck and wasn't ever home and when he was, he would focus on the negative part of Bryttani's "problems". My step mom and I do not and never have gotten along. She almost knocked me down the steps when I was about five months pregnant, about two weeks before we found out that Bryttani would have a cleft. Marcel and his parents ended up stepping in and getting me a place to stay. They bought Bryttani almost everything.
As hard as these memories are, I tell them to you because I never once had a second thought about having Bryttani. I never once accepted termination as an option. Marcel and I were both raised to believe that everything happens for a reason. During my pregnancy we both agreed that we were being handed a very special baby because we could handle it. We both agreed that despite the outcome, things would work out for the best.
The road we have traveled has been rough, however it is well worth it. We have a very beautiful girl who is bright. She is very loving and very caring. Despite the fact that she looks different she is just like any other "normal" child. She makes friends with everyone and everyone who meets her falls in love with her. We have just learned to take it day by day and deal with things as they come. We thank GOD everyday for blessing us with our special gift.
We have always been very open with everything. If there is anything we can help you with, or just to lend an ear to feel free to email us at caseynmarcel@aol.com.
Casey, mom to Bryttani 5yrs.
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This cleftAdvocate page was last updated March 25, 2014
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