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.
Jessica's son, Lucas, was born with a severe cleft lip & palate. She has been kind enough to share their story with us all today.
I have known Jessica for a number of years now and followed her journey through trying to conceive, through pregnancy losses, through pregnancy and through the start of Motherhood.
It's been my absolute privilege and pleasure to do so and I am so excited to continue to watch this special young man continue to grow, thrive and inspire everyone with his strength.
It is with great pride that I share Jessica and Lucas' story with you...
In honour of this excellent cause, we've caught up with a couple of Mom's of children born with cleft lips and palates.
Jessica's son, Lucas, was born with a severe cleft lip & palate. She has been kind enough to share their story with us all today.
I have known Jessica for a number of years now and followed her journey through trying to conceive, through pregnancy losses, through pregnancy and through the start of Motherhood.
It's been my absolute privilege and pleasure to do so and I am so excited to continue to watch this special young man continue to grow, thrive and inspire everyone with his strength.
It is with great pride that I share Jessica and Lucas' story with you...
My journey started in April 2014 when I saw those beautiful 2 pink lines that every woman trying to get pregnant longs to see. We had been trying for about a year and had 2 losses leading up to this glorious, prayed for, day. We were both so excited!
Fast forward to our 20 week anatomy scan when they tell you everything about your sweet child (including the sex). Everything had been going so perfectly; no sickness, little weight gain and I had every good thing going for me that comes along with pregnancy - glowing skin, thick, shiny, gorgeous hair and a tiny baby bump where my little one was growing. Our little one had all its fingers and toes, arms, legs, torso, perfect heart beat and we found out that our little nugget was a boy! Thus came the name Lucas.
Well, Lucas would not let us see his perfect little face. The ultrasound tech tried and tried for a good 30 minutes. Poking and prodding my poor pelvis and shaking around our sweet baby boy. He was already showing how stubborn he was (takes after his Daddy). I wanted to see his cute little face so bad. To stare at those perfect lips, nose and eyes, but he wasn’t having it!
I was kind of curious as to why she was so adamant for him to show his face. But I just laid there while she tried to get him to face us. He didn’t and she sent us back to see the doctor where he had me schedule another ultrasound for 24 weeks. I was confused as to why he wanted to see Lucas’ face so bad but didn’t think much of it. No clefts run in our family so I just figured it was routine so they can cross out any complications.
4 weeks later my MIL and I were in the ultrasound room at my doctor’s office, waiting on the tech to squirt that warm gunk on my tummy to show us our sweet, growing, Lucas (my dear husband didn’t come to this one since we KNEW we wouldn’t be seeing anything new and it was just routine for the tech and my OB to rule out any and all defects)
Lucas still would not turn his face to look at us! He either had his hand in his mouth or would just face to the side. The tech had to go get my OB so he could see anything if Lucas decided to turn for a split second.
Well, I was laying there, MIL at my side, and he breaks the news. Lucas has a unilateral cleft lip. My world stood still and I was devastated. I broke down into tears. How is this possible? Why me? To be honest, I had NEVER even really heard of a cleft lip. My OB wasn’t sure if he had a cleft palate or not because that can’t be seen with a regular ultrasound so I would have to book an appointment with a “specialist”.
An hour later, I got home and broke the news to my DH (dear husband). We held each other and cried.
We told our close family and they were confused and didn’t understand. How could he have a cleft when there is no history of anyone on either sides of our family with a cleft lip?
After talking to one another for a few hours and telling different people in our family, we decide to NOT do ANY research or look up pictures of babies/kids/adults with cleft lip. I also asked for people to not tell me things about it either. We wanted to take things one step at a time and learn as we went.
The only thing we did find out was how common it really is. My DHs stepfather is a researcher and likes to find out anything and everything he can! Cleft lip is the number 1 birth defect (in America). Who would have thunk it!
Oh, I did read something else that made me feel totally guilty and like the cleft was ALL MY FAULT! If you lack folic acid, it could cause the lip/palate to not grow together. The lips form in the first 6 weeks of gestation and the palate within 10. I was even more devastated and that was a factor that helped me decide to not read any more on how “I” caused my child to form a cleft.
Anyways, a week later (25 weeks pregnant) we went to visit the “specialist” who could tell us if Lucas’ cleft extended to his palate. We went back and got a 3D ultrasound and found out that it was unlikely that he had a cleft palate and off we went on our merry way!
Let’s just fast forward some more to 34 weeks and 1 day to when Lucas was born (I went into preterm labor at 31 weeks and was kept in the hospital until he was born on November 10, 2014, 6 weeks premature).
I got done pushing and heard my sweet, perfect, adorable baby boy crying and I looked up to see him. I found out that he did have a cleft palate on the same side as his lip (by this time I wasn’t worried in the slightest about his lip, I learned during the rest of my pregnancy that he was perfect and that God would not give us anything we couldn’t handle!) another devastating thing for me to hear and I almost cried, but sucked it up and pushed past it.
They put my baby in my arms and I got to love on him. Everything was perfect!
The only reason he had to be put in the NICU was so we can get admitted to the Texas Children’s Hospital NICU to get an appointment with the cleft team, also so we could learn how to feed him since he couldn’t latch to breastfeed.
Since he wasn't able to create a good suction on his own, We had to assist him by putting pressure on a bottle made especially for babies with clefts. That was more difficult than you can imagine. You worry about squeezing to hard and choking your child (that is another story that I will get into in a few)
Three days later we got a spot in the NICU downtown and followed the ambulance carrying our precious baby boy. During his stay there we learned more about feeding him and met the team who was going to assist us with repairing Lucas’ lip and palate.
There would be at least 3 surgeries. One to repair his lip (4 months old), one to repair his palate (8 months to a year old) and a bone graft (about 8 years of age) to connect his gums and give him all of his teeth.
We have quite the journey ahead of us.
We will also have to go through speech therapy to help Lucas learn how to speak correctly once his palate is repaired. There is a lot involved because he doesn’t have the muscles that a person who is born with an intact palate has. He won’t be able to say dada (say it and you will see that you use the roof of your mouth (palate) to push your tongue against to form the “d” sound). See I have already learned SO much and I had to do NO research of my own and scare myself more than I needed to be.
We learn that Lucas wass a great candidate for the NAM, Nasoalveolar Molding Device, (another story) and he would be fitted for one at 2 weeks and start wearing it at about 3 weeks. Anyhow, when we finally got to take our baby boy home we had no idea what kind of journey was in store for us.
Lucas has SEVERE reflux, which is another thing that comes along with having a cleft palate (we found a medicine that helps him control it when he is about 2 ½ months old and it makes all of our lives much easier and helps Lucas manage his spitting up). We also found a new way to feed him with a regular bottle that we can buy in stores and make me, my husband and Lucas’ life easier.
When Lucas was 2 weeks old we take him back downtown to get fitted for his NAM. I did do some research and read a few stories on different moms who had to learn how to take care of their baby AND his/her retainer (NAM) all at the same time. I was pretty nervous about having to tape my babies face and connect rubber bands to the tip of a retainer that I going to help shape his lip/nose/palate. I took what they said and went through with a grain of salt because I knew our journey would be different, and it was A LOT easier than I would have expected.
Lucas is such a wonderful baby and takes everything that is thrown at him like a champ. The NAM didn’t bother him at all; he never tried to pull it out and wore it for 3 ½ months straight. The only time we took it out was to clean it and change the rubber bands.
What a difference the NAM made in how wide his cleft lip was, it shaped his nose beautifully and brought his palate/gums to ALMOST touching (the cleft palate goes pretty far back and his uvula is even split in 2 and would have to be reconstructed when they do the palate surgery).
At 4 months of age Lucas got his lip and nose repaired. March 12, 2015 was the date and we were pretty nervous, but also pretty excited to see the results of our hard work and the cleft teams’ surgery.
When we got to see him after 4 grueling hours of waiting, I couldn’t believe how different he looked. His surgery looks so perfect that it was hard for me to notice our baby when we went back to recovery! I was so happy that it brought tears to my eyes! Today,
May 12, 2015, marks 2 months post-surgery and unless you look really close, you can’t even tell he had a cleft lip! His nose looks so good, too! I am really nervous about his cleft palate surgery because I have heard it is a rough recovery, but I am going to take it day by day and enjoy my baby boy!
I could not imagine him any other way and love every single thing about him. God knew what he was doing when he placed Lucas in me and my DHs lives. He has helped us grow and love so much deeper; more than I ever imagined.
Sorry if my story seems kind of scattered. It is hard to put 6 months of life into such a short little story. Lucas has been through, and will go through, more than I ever will in my life and he is so good natured about it. He shows just how resilient babies really are and just how much they can take.
Thank you for reading my story. If you have any questions please feel free to contact me: [email protected].
There is so much you can do to help just by volunteering or donating. Below are a few links for more information on clefts:
http://www.cleftopedia.com/
http://americanpregnancy.org/birth-defects/cleft-lip-cleft-palate/
Fast forward to our 20 week anatomy scan when they tell you everything about your sweet child (including the sex). Everything had been going so perfectly; no sickness, little weight gain and I had every good thing going for me that comes along with pregnancy - glowing skin, thick, shiny, gorgeous hair and a tiny baby bump where my little one was growing. Our little one had all its fingers and toes, arms, legs, torso, perfect heart beat and we found out that our little nugget was a boy! Thus came the name Lucas.
Well, Lucas would not let us see his perfect little face. The ultrasound tech tried and tried for a good 30 minutes. Poking and prodding my poor pelvis and shaking around our sweet baby boy. He was already showing how stubborn he was (takes after his Daddy). I wanted to see his cute little face so bad. To stare at those perfect lips, nose and eyes, but he wasn’t having it!
I was kind of curious as to why she was so adamant for him to show his face. But I just laid there while she tried to get him to face us. He didn’t and she sent us back to see the doctor where he had me schedule another ultrasound for 24 weeks. I was confused as to why he wanted to see Lucas’ face so bad but didn’t think much of it. No clefts run in our family so I just figured it was routine so they can cross out any complications.
4 weeks later my MIL and I were in the ultrasound room at my doctor’s office, waiting on the tech to squirt that warm gunk on my tummy to show us our sweet, growing, Lucas (my dear husband didn’t come to this one since we KNEW we wouldn’t be seeing anything new and it was just routine for the tech and my OB to rule out any and all defects)
Lucas still would not turn his face to look at us! He either had his hand in his mouth or would just face to the side. The tech had to go get my OB so he could see anything if Lucas decided to turn for a split second.
Well, I was laying there, MIL at my side, and he breaks the news. Lucas has a unilateral cleft lip. My world stood still and I was devastated. I broke down into tears. How is this possible? Why me? To be honest, I had NEVER even really heard of a cleft lip. My OB wasn’t sure if he had a cleft palate or not because that can’t be seen with a regular ultrasound so I would have to book an appointment with a “specialist”.
An hour later, I got home and broke the news to my DH (dear husband). We held each other and cried.
We told our close family and they were confused and didn’t understand. How could he have a cleft when there is no history of anyone on either sides of our family with a cleft lip?
After talking to one another for a few hours and telling different people in our family, we decide to NOT do ANY research or look up pictures of babies/kids/adults with cleft lip. I also asked for people to not tell me things about it either. We wanted to take things one step at a time and learn as we went.
The only thing we did find out was how common it really is. My DHs stepfather is a researcher and likes to find out anything and everything he can! Cleft lip is the number 1 birth defect (in America). Who would have thunk it!
Oh, I did read something else that made me feel totally guilty and like the cleft was ALL MY FAULT! If you lack folic acid, it could cause the lip/palate to not grow together. The lips form in the first 6 weeks of gestation and the palate within 10. I was even more devastated and that was a factor that helped me decide to not read any more on how “I” caused my child to form a cleft.
Anyways, a week later (25 weeks pregnant) we went to visit the “specialist” who could tell us if Lucas’ cleft extended to his palate. We went back and got a 3D ultrasound and found out that it was unlikely that he had a cleft palate and off we went on our merry way!
Let’s just fast forward some more to 34 weeks and 1 day to when Lucas was born (I went into preterm labor at 31 weeks and was kept in the hospital until he was born on November 10, 2014, 6 weeks premature).
I got done pushing and heard my sweet, perfect, adorable baby boy crying and I looked up to see him. I found out that he did have a cleft palate on the same side as his lip (by this time I wasn’t worried in the slightest about his lip, I learned during the rest of my pregnancy that he was perfect and that God would not give us anything we couldn’t handle!) another devastating thing for me to hear and I almost cried, but sucked it up and pushed past it.
They put my baby in my arms and I got to love on him. Everything was perfect!
The only reason he had to be put in the NICU was so we can get admitted to the Texas Children’s Hospital NICU to get an appointment with the cleft team, also so we could learn how to feed him since he couldn’t latch to breastfeed.
Since he wasn't able to create a good suction on his own, We had to assist him by putting pressure on a bottle made especially for babies with clefts. That was more difficult than you can imagine. You worry about squeezing to hard and choking your child (that is another story that I will get into in a few)
Three days later we got a spot in the NICU downtown and followed the ambulance carrying our precious baby boy. During his stay there we learned more about feeding him and met the team who was going to assist us with repairing Lucas’ lip and palate.
There would be at least 3 surgeries. One to repair his lip (4 months old), one to repair his palate (8 months to a year old) and a bone graft (about 8 years of age) to connect his gums and give him all of his teeth.
We have quite the journey ahead of us.
We will also have to go through speech therapy to help Lucas learn how to speak correctly once his palate is repaired. There is a lot involved because he doesn’t have the muscles that a person who is born with an intact palate has. He won’t be able to say dada (say it and you will see that you use the roof of your mouth (palate) to push your tongue against to form the “d” sound). See I have already learned SO much and I had to do NO research of my own and scare myself more than I needed to be.
We learn that Lucas wass a great candidate for the NAM, Nasoalveolar Molding Device, (another story) and he would be fitted for one at 2 weeks and start wearing it at about 3 weeks. Anyhow, when we finally got to take our baby boy home we had no idea what kind of journey was in store for us.
Lucas has SEVERE reflux, which is another thing that comes along with having a cleft palate (we found a medicine that helps him control it when he is about 2 ½ months old and it makes all of our lives much easier and helps Lucas manage his spitting up). We also found a new way to feed him with a regular bottle that we can buy in stores and make me, my husband and Lucas’ life easier.
When Lucas was 2 weeks old we take him back downtown to get fitted for his NAM. I did do some research and read a few stories on different moms who had to learn how to take care of their baby AND his/her retainer (NAM) all at the same time. I was pretty nervous about having to tape my babies face and connect rubber bands to the tip of a retainer that I going to help shape his lip/nose/palate. I took what they said and went through with a grain of salt because I knew our journey would be different, and it was A LOT easier than I would have expected.
Lucas is such a wonderful baby and takes everything that is thrown at him like a champ. The NAM didn’t bother him at all; he never tried to pull it out and wore it for 3 ½ months straight. The only time we took it out was to clean it and change the rubber bands.
What a difference the NAM made in how wide his cleft lip was, it shaped his nose beautifully and brought his palate/gums to ALMOST touching (the cleft palate goes pretty far back and his uvula is even split in 2 and would have to be reconstructed when they do the palate surgery).
At 4 months of age Lucas got his lip and nose repaired. March 12, 2015 was the date and we were pretty nervous, but also pretty excited to see the results of our hard work and the cleft teams’ surgery.
When we got to see him after 4 grueling hours of waiting, I couldn’t believe how different he looked. His surgery looks so perfect that it was hard for me to notice our baby when we went back to recovery! I was so happy that it brought tears to my eyes! Today,
May 12, 2015, marks 2 months post-surgery and unless you look really close, you can’t even tell he had a cleft lip! His nose looks so good, too! I am really nervous about his cleft palate surgery because I have heard it is a rough recovery, but I am going to take it day by day and enjoy my baby boy!
I could not imagine him any other way and love every single thing about him. God knew what he was doing when he placed Lucas in me and my DHs lives. He has helped us grow and love so much deeper; more than I ever imagined.
Sorry if my story seems kind of scattered. It is hard to put 6 months of life into such a short little story. Lucas has been through, and will go through, more than I ever will in my life and he is so good natured about it. He shows just how resilient babies really are and just how much they can take.
Thank you for reading my story. If you have any questions please feel free to contact me: [email protected].
There is so much you can do to help just by volunteering or donating. Below are a few links for more information on clefts:
http://www.cleftopedia.com/
http://americanpregnancy.org/birth-defects/cleft-lip-cleft-palate/