Story1

Riley Ann was born on Saturday, December 22, 2001 at 1:45 A.M. at Mount Carmel East Hospital in Columbus, Ohio. She is a beautiful, healthy and strong baby girl, who is happy and playful and truly a blessing from heaven.

My husband, Jake and I were not aware of Riley�s differences before she was born. We had planned to become pregnant but did not think it would happen the first month of trying. We found out I was pregnant the day after Mother�s Day and was then put on prenatal vitamins, I was about seven weeks pregnant and due on January 19, 2002.

I had a wonderful pregnancy. I experienced no morning sickness and felt great. Around my 13th week, I woke up one Saturday morning and noticed I was spotting. The following weekend, I woke up Saturday morning in a pool of blood and panicked. Both times I paged my doctor, who said that since I was not in any pain or discomfort that I wasn�t miscarrying and there was nothing that could be done, but advised me to stay in bed all weekend. I saw him on Monday and he performed an ultrasound and checked the baby�s heartbeat and assured me everything was fine. He then put me on bed rest for a month. I continued to have spotting and after about two weeks of bed rest, it stopped.

The Big Day
On Friday, December 21, 2001, the Friday before Christmas, I woke up for work and was spotting. I had a checkup at 3:00 P.M. that day so I did not call my doctor.

As the day progressed, I felt a little something in my belly but didn�t think it was contractions, and I just figured I would wait until my doctor�s appointment to see what it was. By lunchtime, I could feel it more and more and thought, �Maybe I AM having contractions.� My husband and I went to my appointment, where my doctor confirmed I was in labor. He estimated I would deliver within 12-14 hours and sent me to the hospital.

Because I was just entering my 36th week and was considered preterm, a pediatrician was present for the delivery incase there was something wrong with the baby. At 1:45 A.M. Riley Ann was born. You always see in the movies or on television where the mother gives birth and the doctor immediately holds the baby up for the mother to see. Well, my doctor didn�t do that and I just thought that they wanted to clean her up first. After what seemed like a very long time, my husband and I asked if everything was OK. My doctor said, �We have a problem.� Horrible pictures went through my head as to what the �problem� was. My doctor then told us that our baby had a cleft lip. I did not know what that meant.

FINALLY, I got to meet the most beautiful girl in the world. I was so overjoyed to finally have my baby girl and that she was so incredibly beautiful that her cleft lip was nothing. They only let my husband and me hold her for a few minutes before they took Riley to the NICU. My sister, who was standing outside the room, knew immediately that something was wrong because they do not usually take the baby from the room after birth, also because when they took Riley to the NICU, they had her face covered with a blanket.

Jake followed Riley to the NICU and sent my sister in to be with me. That is when emotions went crazy. The pediatrician came in to talk to us and explained that Riley had a cleft lip and cleft palate and that she would have to undergo surgery to repair them. My heart broke into a million pieces. I just couldn�t understand what had happened, what went wrong. My mind raced to remember what I had done to cause this. The pediatrician further explained that because my baby was born with a cleft palate, she would not be able to suck and so would not be able to nurse. I was even more upset because I had so wanted to breastfeed, but the pediatrician said that I could still give her breast milk by expressing it. So, that is what I decided to do. I felt so helpless and I wanted to help my little girl as much as I could. I knew that breast milk is best and I knew it would help her with her surgeries.

A few minutes later, my husband came back to the room and said, �There�s something else wrong.� My heart just sank and I immediately started crying again. I couldn�t believe what was happening. The moment I had been waiting for all my life, the birth of our first child, was not the way I had imagined it. Jake told me that the baby�s fingers are short on both hands but that he didn�t know anything else. We didn�t know what had happened. Did her fingers not grow? The pediatrician explained that it looked like a very rare condition called Amniotic Band Syndrome (ABS), Riley�s fingers where amputated during pregnancy. I just couldn�t believe what I was hearing. My baby�s fingers were cut off? How? Did it hurt? My heart hurt so badly and thoughts raced through my mind. The pediatrician was not able to provide further information.

Finally after almost 12 hours after delivery, we were able to see our precious girl again. We were not allowed to see her before that because the NICU wanted to get her on an IV since she couldn�t eat due to her cleft palate. My husband and I were so happy to see her and finally be with her. I was then able to see that Riley�s three middle fingers on her right hand were cut off at the first joint, her pinky finger was affected that she has a tiny fingernail that grows upward and her thumb had a crease all the way around the bottom where it was almost cut off. The index finger on her left hand was also cut off at the first joint. The middle finger on her left hand was cut off at the second joint. The middle toe on her left foot was cut off at the tip so there is no toenail and the fourth toe was affected that it has a tiny toenail that grows upward. She was the most beautiful thing we had ever seen and knew that her differences were just cosmetic, for which we are so thankful. Riley was the best Christmas present we could have ever gotten.

In the NICU, we learned how to feed Riley using the Haberman Feeder and she did a fabulous job. We were so proud of her.

While in the hospital, the pediatrician ordered an ultrasound of Riley�s face due to her cleft to make sure that both sides of her face were the same. The pediatrician noticed something and so ordered a CAT scan. It confirmed that Riley is missing her corpus callosum, the middle part of the brain that connects the left and right sides together. Again, we were distraught to learn that something else was different. The pediatrician told us not to be alarmed, that many people are missing this part of the brain and are fine but she wanted Riley to have an MRI to make sure everything was OK. An MRI was scheduled for Riley two weeks later and the results were normal.

Meeting the Cleft Team
A couple of weeks later, we met with the cleft team at Columbus Children�s Hospital. Unfortunately, we did not research clefts before our appointment and so was unprepared for what we were about to hear. One doctor after another explained that because our daughter has a cleft palate, this would be wrong and that would be wrong, she wouldn�t be able to do this and she won�t be able to do that. The ENT doctor said due to her cleft palate, Riley would be more likely to have fluid behind the ears and would need tubes put in. The nurse practitioner said Riley wouldn�t be able to suck so she won�t be able to use a straw and because she couldn�t suck, her facial muscles wouldn�t be as developed, which is the reason my husband and I agreed to give Riley a pacifier to encourage her to suck. The speech pathologist said that she may have a speech impediment and that her first word would probably be unintelligible. I was so sad to hear that I wouldn�t be able to understand my baby�s first word or wouldn�t even recognize that she had said her first word. The orthodontist explained that because Riley�s gum line was affected, her teeth would not come in straight or would be missing and that she would need a bone graft. I wasn�t prepared to hear all of this and cried after each doctor left the room and pulled myself together before the next doctor came in.

We also met with a geneticist. She explained that Amniotic Band Syndrome, (also referred to as Amniotic Banding and other names) is when one of the two layers of the amniotic sac ruptures, leaving amniotic bands floating around in the sack. It�s kind of like when a balloon pops and you�re left with pieces of the balloon. These pieces of the amniotic sac or bands were left floating around in the amniotic sac. We are extremely blessed that the amniotic bands had attached themselves only to her fingers and toes. In some cases they attach themselves to a limb of the body or worse, the umbilical cord or head. She said that this occurs around the 13-15th week of gestation, which most likely is why I was bleeding, which was never diagnosed. She advised us that both the cleft lip and palate and ABS were flukes that just happened.

Riley was then switched to the Mead Johnson Cleft Lip/Palate Nurser, which requires her to suck more. I was also sad at the thought that my baby wouldn�t be able to hold her own bottle, as you see many babies do, because the Cleft Lip/Palate Nurser requires pressure on the bottle to help the flow of milk.

Riley has been an absolute joy in our lives and we know we are extremely blessed and fortunate to have her as our daughter. She is an incredible baby and there is nothing she can�t do. She is growing and developing right on target. She is perfect in every way and we couldn�t love her more.

Riley's Story
by Mommy