#CleftAwareness 2015 - Elizabeth & Sebastian's Story
It's National Cleft Awareness Week this week, raising awareness of cleft lips and palates.
In honour of this excellent cause, we've caught up with a couple of Mom's of children born with cleft lips and palates.
Elizabeth's son, Sebastian, was born with a cleft lip and palate that had not been detected throughout the multiple scans they had during pregnancy. Here is their story.
Elizabeth and I met during our mutual struggle with infertility. I got to witness the excitement of her discovering she was pregnant and the joy of those following 9 months. The huge surprise at birth was one part of the beautiful day that made her a Mom and the story of what was to follow is a testament to her strength and love, and of how Sebastian possesses those same wonderful qualities...
In honour of this excellent cause, we've caught up with a couple of Mom's of children born with cleft lips and palates.
Elizabeth's son, Sebastian, was born with a cleft lip and palate that had not been detected throughout the multiple scans they had during pregnancy. Here is their story.
Elizabeth and I met during our mutual struggle with infertility. I got to witness the excitement of her discovering she was pregnant and the joy of those following 9 months. The huge surprise at birth was one part of the beautiful day that made her a Mom and the story of what was to follow is a testament to her strength and love, and of how Sebastian possesses those same wonderful qualities...
When a couple plans on having a baby they can't imagine them any other way but perfect; with all ten fingers, all ten toes, and a beautiful baby face. Most people see others whose babies are afflicted with some birth defect or ailment and they think "poor them". What they don't think is "Could that be me?” That was my husband and I as we prepared for the arrival of our firstborn.
It took us nearly two years to conceive him with some help from fertility drugs and lots of prayers. Without Clomid my little one would not be here and if my uterus was not shaped like a heart my little one would have been a tubal pregnancy. Out of at least three eggs released during ovulation, my little guy was the one that made it. This was a very special time for us. Every doctor visit was exciting and in the beginning they were every two weeks as I was classified high risk due to my abnormally shaped uterus.
My doctor was great and she was upfront and honest about the possibility of complications closer to my due date so the fear of something going wrong was always there. Unfortunately, that doctor had a permanent change of station since she is active duty in the army. With her departure came multiple other doctors seeing me at random. She left right before my anatomy scan so it was a different doctor tasked with the job of looking over my results. Of course my little one would not show us his sweet face and the tech told us to expect to come see her again because of it. The doctor never sent us back because he didn't look over the scan. Even then I remember thinking that something looked "off" about my little guy's nose but babies always look a little "off" on ultrasounds, right? I was getting regular ultrasounds at every appointment so I didn't think to push the issue about a second anatomy scan and I was going out of town soon so my mind was elsewhere. Looking back I wish I would have brought up the anatomy scan more than once. It wouldn't have changed anything but at least we could have been prepared. It wouldn't have changed how I felt about my little guy one bit. I've been in love with him since before he was ever conceived. I wrote letters to him not knowing when he would come or who he would be. Nothing could have ever changed how I felt about my little guy.
As my due date drew near and I finally finished my last day of work I went to the doctor 38 weeks pregnant. The doctor came in telling us his usual silly jokes that you must force yourself to laugh at. He decided to measure Sebastian to see an estimate of how big he would be. As usual he turned the screen so that I could see and began to do his thing. I watched with pride as we looked at his head but my eyes became concerned as his measurements varied from 34-35 weeks and about 5 lbs. 7 oz. My heart pounded and I thought I was going to be sick. I don't know how I kept the tears at bay as my fears grew and the doctor kept asking "How active is he?" and "Do you feel him kicking during the day?". Sebastian was always very active but the questions scared me.
After he was done he told us to wait while he went to look over my chart. I told my husband, "Sometimes when babies measure small it's because they've stopped growing and the doctors will take them out early so that they can grow on the outside". I was not ready to have my baby boy no matter how badly I wanted to meet him. I was supposed to have two weeks to get everything together for visitors and the baby. I just wasn't ready and I was scared. When he came back he told us just what I told my husband and then he said to go into the hospital that evening to be induced. Neither of us expected it to be THAT soon and we each made him repeat his instruction.
So that was it. I was to be induced for the health of my boy and I could not have been any more nervous. As we gathered our things and tidied up the house as best we could we also made phone calls to our families letting them know. Everyone was so excited but I was nervous and scared. I felt like something wasn't right and I was upset with my body for failing my boy. Labor was not as bad as I expected even with the horrible contractions from being induced. I wanted to have a natural birth but I decided to get the epidural. I knew I would be too exhausted otherwise and my body was reacting really well to the pitocin. Those contractions were awful and right on top of each other giving me very few breaks in between.
When the time came for my sweet boy to arrive it seemed like a dozen nurses rushed into the room for the final pushes. When that last push came I KNEW it would get him out and as I saw his sweet face emerge I felt the most incredible sense of relief mixed with joy and tears started flowing. It was the happiest moment of my life. I saw my baby boy coming into this world and then everyone began to panic. I was supposed to get him first allowing us to do skin to skin and my husband was supposed to cut the umbilical cord but neither of those things happened.
For you see he had an unexpected cleft lip and palate and he sounded congested when he breathed. I didn't know he had the cleft until the doctor said it because I didn't see it when I first saw him. I was either too far away or far too happy but I did not see his cleft. What I saw was a beautiful albeit very angry baby boy. The longer they kept him from my arms the more my tears turned to those of despair. I felt like I needed him right there with me. You carry a child for nearly nine months and as soon as he's born they keep him from you? I was irrational with my feelings it's true. I know the nurses were just doing what was best for him. My husband got to go see him while I was tended too and I was so jealous of him. My main concern, however, was how much he weighed and I probably asked that question several times before I heard "4lbs 12oz". So he was smaller than they predicted. More tears fell down my face. When my husband came back to me his first words were "He's beautiful" and this from a man who says all newborns are ugly. Then he went on to describe the cleft to me. When they finally brought Sebastian over to me he was crying and as soon as he was placed in my arms he stopped and we just stared at each other. My swollen tear stained face looking down at his swollen angry face. I could have stared at him for hours. He was beautiful and yes he had a bilateral cleft lip and palate meaning there was not one but two clefts that went through his lips, up into his nose, and all the way up to his palate. But he was my sweet baby. The one that I would whisper "I love you," to as I held my belly. This did not change how I felt about him but it did make me very sad about what the future would hold for him.
And then they took him away and I felt like dying. I can't imagine how any new mother can be away from her newborn. It was agony for me. He spent six days in the NICU while they monitored his breathing and taught us how to feed him. Before we could leave he had to gain weight so we were very diligent with feedings. I thought he would never get to come home with us but when he finally did it was the most amazing feeling. As I type this my little Sebastian is asleep beside me weighing just 11 lbs 3 oz now as a 5 month old. He is a month post lip and nose repair with his palate repair expected in September or October. I've grieved the loss of my boy's first smile and fallen in love with his new one. This isn't an easy road we travel but it's far easier than many other's. I know that people tend to feel sorry for those whose children are born "imperfect" but I do not feel sorry for myself. I am beyond blessed to be his mom and extremely proud of the strength he has shown me through all he's been through so far. Everyone wants a perfect baby and that is exactly what I got. He has ten toes, ten fingers, and a beautiful baby face.
It took us nearly two years to conceive him with some help from fertility drugs and lots of prayers. Without Clomid my little one would not be here and if my uterus was not shaped like a heart my little one would have been a tubal pregnancy. Out of at least three eggs released during ovulation, my little guy was the one that made it. This was a very special time for us. Every doctor visit was exciting and in the beginning they were every two weeks as I was classified high risk due to my abnormally shaped uterus.
My doctor was great and she was upfront and honest about the possibility of complications closer to my due date so the fear of something going wrong was always there. Unfortunately, that doctor had a permanent change of station since she is active duty in the army. With her departure came multiple other doctors seeing me at random. She left right before my anatomy scan so it was a different doctor tasked with the job of looking over my results. Of course my little one would not show us his sweet face and the tech told us to expect to come see her again because of it. The doctor never sent us back because he didn't look over the scan. Even then I remember thinking that something looked "off" about my little guy's nose but babies always look a little "off" on ultrasounds, right? I was getting regular ultrasounds at every appointment so I didn't think to push the issue about a second anatomy scan and I was going out of town soon so my mind was elsewhere. Looking back I wish I would have brought up the anatomy scan more than once. It wouldn't have changed anything but at least we could have been prepared. It wouldn't have changed how I felt about my little guy one bit. I've been in love with him since before he was ever conceived. I wrote letters to him not knowing when he would come or who he would be. Nothing could have ever changed how I felt about my little guy.
As my due date drew near and I finally finished my last day of work I went to the doctor 38 weeks pregnant. The doctor came in telling us his usual silly jokes that you must force yourself to laugh at. He decided to measure Sebastian to see an estimate of how big he would be. As usual he turned the screen so that I could see and began to do his thing. I watched with pride as we looked at his head but my eyes became concerned as his measurements varied from 34-35 weeks and about 5 lbs. 7 oz. My heart pounded and I thought I was going to be sick. I don't know how I kept the tears at bay as my fears grew and the doctor kept asking "How active is he?" and "Do you feel him kicking during the day?". Sebastian was always very active but the questions scared me.
After he was done he told us to wait while he went to look over my chart. I told my husband, "Sometimes when babies measure small it's because they've stopped growing and the doctors will take them out early so that they can grow on the outside". I was not ready to have my baby boy no matter how badly I wanted to meet him. I was supposed to have two weeks to get everything together for visitors and the baby. I just wasn't ready and I was scared. When he came back he told us just what I told my husband and then he said to go into the hospital that evening to be induced. Neither of us expected it to be THAT soon and we each made him repeat his instruction.
So that was it. I was to be induced for the health of my boy and I could not have been any more nervous. As we gathered our things and tidied up the house as best we could we also made phone calls to our families letting them know. Everyone was so excited but I was nervous and scared. I felt like something wasn't right and I was upset with my body for failing my boy. Labor was not as bad as I expected even with the horrible contractions from being induced. I wanted to have a natural birth but I decided to get the epidural. I knew I would be too exhausted otherwise and my body was reacting really well to the pitocin. Those contractions were awful and right on top of each other giving me very few breaks in between.
When the time came for my sweet boy to arrive it seemed like a dozen nurses rushed into the room for the final pushes. When that last push came I KNEW it would get him out and as I saw his sweet face emerge I felt the most incredible sense of relief mixed with joy and tears started flowing. It was the happiest moment of my life. I saw my baby boy coming into this world and then everyone began to panic. I was supposed to get him first allowing us to do skin to skin and my husband was supposed to cut the umbilical cord but neither of those things happened.
For you see he had an unexpected cleft lip and palate and he sounded congested when he breathed. I didn't know he had the cleft until the doctor said it because I didn't see it when I first saw him. I was either too far away or far too happy but I did not see his cleft. What I saw was a beautiful albeit very angry baby boy. The longer they kept him from my arms the more my tears turned to those of despair. I felt like I needed him right there with me. You carry a child for nearly nine months and as soon as he's born they keep him from you? I was irrational with my feelings it's true. I know the nurses were just doing what was best for him. My husband got to go see him while I was tended too and I was so jealous of him. My main concern, however, was how much he weighed and I probably asked that question several times before I heard "4lbs 12oz". So he was smaller than they predicted. More tears fell down my face. When my husband came back to me his first words were "He's beautiful" and this from a man who says all newborns are ugly. Then he went on to describe the cleft to me. When they finally brought Sebastian over to me he was crying and as soon as he was placed in my arms he stopped and we just stared at each other. My swollen tear stained face looking down at his swollen angry face. I could have stared at him for hours. He was beautiful and yes he had a bilateral cleft lip and palate meaning there was not one but two clefts that went through his lips, up into his nose, and all the way up to his palate. But he was my sweet baby. The one that I would whisper "I love you," to as I held my belly. This did not change how I felt about him but it did make me very sad about what the future would hold for him.
And then they took him away and I felt like dying. I can't imagine how any new mother can be away from her newborn. It was agony for me. He spent six days in the NICU while they monitored his breathing and taught us how to feed him. Before we could leave he had to gain weight so we were very diligent with feedings. I thought he would never get to come home with us but when he finally did it was the most amazing feeling. As I type this my little Sebastian is asleep beside me weighing just 11 lbs 3 oz now as a 5 month old. He is a month post lip and nose repair with his palate repair expected in September or October. I've grieved the loss of my boy's first smile and fallen in love with his new one. This isn't an easy road we travel but it's far easier than many other's. I know that people tend to feel sorry for those whose children are born "imperfect" but I do not feel sorry for myself. I am beyond blessed to be his mom and extremely proud of the strength he has shown me through all he's been through so far. Everyone wants a perfect baby and that is exactly what I got. He has ten toes, ten fingers, and a beautiful baby face.