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Friday, December 18, 2015

a surprising challenge : overcoming Cleft Lip and Palate surgeries

I am so honored to share this incredible story of worry, fear, and ultimately strength, courage and perseverance. This little man, Leo, has a fierce determination to overcome obstacles and smile through it all. His face lights up a room! His mama, Abby Jones, is one Strong Momma, who I'm so happy to feature here today. She has gone through so much with her first little man, all the while staying positive and doing the best that she can. 

She is one example of how our Mommy Stories group of moms makes the most wonderful connections to other moms. She's met some moms who have become her lifeline and support group online, and for that I'm so grateful this group exists. 

Thank you for sharing your story and your beautiful son with us, Abby. 

Images shared from Abby Jones

Leo is a spunky 15 month old baby who was born with a Cleft lip and Palate. 

I went into the routine 20 week ultrasound where they check and make sure everything looks good with the baby. I had already found out that we were having a boy when I was 15 weeks along because I couldn’t wait. My husband was deployed to Afghanistan so my mom came to the appointment with me. 

The Ultrasound tech made me almost do somersaults on the table (I didn’t know at that time that she was checking his spine because cleft lip/palate can be related to Spina Bifida). I kept asking "is everything alright?" and she said "Oh, the doctor will go over everything with you". My biggest "fear" was that the baby was in fact a girl and not a boy. (I had already returned clothes because I thought I was having a girl at first!) My mom and I went into the exam room and waited for the Doctor to come in. I was taking pictures of the ultrasound pictures and sending them to Leonard. 

She came in and we chatted and talked about different things about how I was feeling and my excitement. 

She then put her hand on my knee and said "Well, I found some things concerning on your ultrasound". At this point I was thinking that my baby had something major that he wasn't going to survive. 

As my eyes started to well up with tears she said "Your baby has a cleft lip and possible palate". I immediately said "there's no way because my baby isn’t a child in a third world country." All the commercials for Operation Smile flashed through my head. I said "how am I going to tell my husband this?!". I called him and gave the doctor the phone and she explained it to him because I couldn’t even catch a breath. We finished up our visit which was a blur and left. 

I got into my mom's car and just started to cry. "Why me?", "Why Leo?" is all I kept saying. "How is he going to eat?" "Will I be able to breastfeed?" "Will he have to have surgeries?" I thought that I had done something wrong and this was karma getting back to me. 

I began to google (which wasn’t the best idea). I saw pictures of kids with these giant gaps in their mouths, teeth growing in all different directions, pictures of babies in recovery rooms and so many other things. I couldn’t believe that this was my reality. The day I found out I posted in the Mommy Stories asking if anyone had been through this or if anyone knew anyone who had been through this. A mom privately messaged me and said that her friend from high school had a baby with a cleft lip and palate and told me to reach out to her. This mom changed my life (and so did the Mommy Stories) because if it wasn’t for this group, I wouldn’t have been introduced to Jennifer who then introduced me to the Cleft Mommy world! 

I learned that 1 in 700 babies are born with a Cleft lip and Palate. 

I began to look into hospitals (knowing that Leo would need surgeries). I met with the team at Dartmouth Hitchcock and the team at Boston Children's Hospital. Both teams were great, but did things very differently. The team at Dartmouth did two surgeries and used the NAM device which involves week trips to the clinic and lots of taping! The team at Boston Children's did 4 surgeries (depending on palate involvement) and they use the Latham device which only requires 3 trips back to the clinic after surgery but is a surgery procedure so this requires anesthesia. I was torn between these two teams. Ultimately, we decided that Boston Children's was the team we were going to use. 

The meetings were very overwhelming. Listening to stories from other moms and what their struggles were was hard. But those things running around, laughing and smiling made me realize that it was going to be okay. I had to keep telling myself that Leo was going to be okay. 

Flash forward to July 24, 2014. I went to my appointment and my blood pressure was high (it had been at my last few visits). They decided to induce me that night at 38 weeks. I felt like I was as prepared as I could be to meet my little man. I had done research, talked to MANY other moms and met and decided on a team for his surgeries. I had the special bottles he would need. Because we believed his palate was cleft as well, he wouldn’t be able to suck. We had the Haberman nipple and the Pigeon bottle. After 3 days in the hospital, Leo was born via emergency C-section. 

All my worries went away as soon as I saw that beautiful, wide smile. He was the sweetest little boy I had every laid eyes on. 

The OR was filled with nurses, a mid-wife, a OB, a pediatrician and an anesthesiologist. We all waited with bated breath for Leo to come out. We wanted to make sure that he was breathing and that everything was okay. I remember waiting to hear whether or not his palate was going to be intact or not. There was a strong possibility, but they weren’t 100% sure. He came out and made one little cry sound and that was it. I kept asking "is he okay?". They confirmed Unilateral Cleft lip and Palate. 

They wrapped all 5lbs 8oz of him up and handed him to Leonard as we both cried. He was beautiful. I knew that he had a long road ahead of him, but he was Leo the Lion so he was born brave and with a "roar". We went back into our room where we just snuggled him. My family came in and everyone instantly fell in love. I started to pump because we tried to breastfeed and he just couldn’t do it. He got donor milk until mine came in. We tried to feed him with the Haberman bottle which he didn’t take to very well. He was so small and the nipple was so big. The Haberman is a nipple that you have to squeeze for the baby. All they have to do is to basically swallow. 

We tried the Pigeon nipple which is a nipple that doesn’t need much suction, but again it was too big for him. We struggled for those first 3 days to get him to eat. He wouldn’t take a bottle from me because he was smart and knew were the food was supposed to come from. So I pumped and my mom and Leonard fed him. I ended up being discharged but Leo had to go into the nursery because he wasn’t gaining any weight. A NG tube ended up being inserted in his nose when he was 5 days old. I asked the nurse if they could put one in my nose too so I knew what it felt like (they said no). I would lay in bed at the hospital and cry and cry because I wanted to take my baby home. I fell into a depression that I eventually was able to talk myself out of without needing to see a doctor or needing medication. 

I didn’t leave the hospital much because I wanted to be with Leo. I didn’t go home until he was allowed to. He came home from the hospital when he was 11 days old. The first months were a struggle. He would cry and cry and cry and we never knew why. When he was 2 months old I was concerned that he was still so small. We took him to his pediatrician and she told us that we need to take him to Boston right away. He was admitted to Boston Children's hospital at 2 months old weighing 5lbs 2oz. We were there for 8 days. He received another NG tube which he had from September to January. He pulled it out 8 times so I had enough of that and so did he! 

His first surgery was on December 5, 2014 which was the Latham insertion. They put in a device that resembles a palate expander except it pulled the palate together over 6 weeks. This surgery was about 2 hours long and required a 1 night stay in the hospital. His second surgery was February 16, 2015. This surgery the Latham was removed and he had a lip adhesion which closed his right nostril and made him have a little "Elvis lip". This surgery was 5 hours long and required a 1 night stay in the hospital. His third surgery was on May 5, 2015. This was the big one that I was VERY nervous about. He had his palate repaired. This is usually the last surgery but because he was too small at first, his surgeries got put off. His surgeon wanted his palate repaired before he was 1 year old so that speech wasn’t too affected. This surgery was about 5 hours and required a 2 night stay in the hospital. His 4th and final surgery was on July 28, 2015 (the day after his first birthday). This was the full lip repair. This surgery was 7 hours long and required 2 nights in the hospital. We had to go back a week after his last surgery to have the sutures removed. It was a long, hard road for Leo in his first year of life. 

He is done surgeries for now, but will have to have a lot of dental work done as the years go on. His top tooth on his cleft side has come in crooked and he will most likely be missing the tooth next to it. His next surgery will be around the age of 8 where a piece of his hip bone will be taken out and used to make a hard palate in his mouth. 

He hasn’t let any of his surgeries hold him back. 

He is in Early Intervention for Speech therapy and Occupational therapy. He is starting to walk along furniture and with a walker. He has quite the little personality too! I can't wait to watch him grow (although I wish time would slow down) and learn new things! 

I look back on the day I found out and wish I could tell myself that everything was going to be okay. Leo is a perfect, healthy, loving, kind, sweet 15 month old whom I love to pieces. It was a very hard year but I wouldn’t change a thing! 

I have met so many amazing moms and I am so thankful for all the love and support I have had from all the moms in the Mommy Stories group and my Cleft Mom groups throughout this journey!

The Facebook groups I use for support are Cleft Mom Support and A Cleft Mommy's Bond of Friendship. 

A great website that was started by cleft moms is called 

I would say what I've learned about myself is that seeing as how Leo was my first baby I didn't know what to expect anyways as a first time mom so the added stress of being a first time cleft mom was hard. 

I learned that I really was strong when I didn't think I could do it. 

Waking up every 3 hours no matter what to tube feed Leo or all the time spent in the hospital when I hadn't slept in what felt like days was so hard, but I did it because I was his mom and because that's just what I had to do. He taught me how to be strong and whenever I felt like giving up, he would flash me that wide smile and I knew that everything was going to be okay. 

My advice for moms going through this is that "it's going to be okay and your baby is perfect". If you find out during pregnancy, don't stress the rest of your pregnancy. I didn't really enjoy the last half of it because I was so worried about Leo and everything that came along with having a child with a cleft. When your baby is born, nothing else matters. They are absolutely perfect in every way. 

I would also say don't hide it from the world. My husband didn't really want me to take Leo out because he was afraid of what other people would say about him. I took him out all the time. There were stares, weird looks, lots of "what's wrong with your baby?" and many silent questions I could tell were running through people's minds. I used this as a time to educate people. 

Cleft lip/palates are very common, but aren't seen a lot if that makes sense. Many people had never seen a child "in person" with a cleft. I remember being at Walmart and someone seeing Leo and saying "oh he has cleft lip that sucks". I said to her "no it actually doesn't, he's perfect" and I walked away. It's hard to hear people who don't know you from a hole in the wall make comments about your child but as much as it hurts and upsets you, you have to just move on and not let it get to you. 

My advice to the mom going through the surgeries is to be an advocate for your child. Keep the nurses on top of your child's pain meds. Make sure that you ask questions and get them answered. Surgeries can be long but try to have something to distract yourself as best as you can. The hardest part was leaving my son with strangers and walk away from him as they brought him back to the OR. They let me take him back twice out of the 4 surgeries. All hospitals are different but I would beg, beg, beg to let you bring them back! It made it a little bit easier to see where he was going to be. 

Overall, the best advice I can give is to just try not to worry, which is easier said then done. When they told me about his cleft I was so scared and worried about how he would grow up. As I write this, Leo is walking all over the living room throwing balls and looking at the Christmas tree. It gets easier and no matter what, your baby will be okay and so will you!

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