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February 2003

Cleft Palate, Micrognathia
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Our second child, Blake was born on a rainy June morning in 1999. It had been a great pregnancy and an easy birth. My husband and I were relieved that everything had gone so perfectly with the pregnancy and birth. After the trauma of a high-risk pregnancy with every imaginable intervention with our first child, we had hoped and prayed that things would be fine with Blake. Consequently, I was crushed when Blake was whisked away from the birth center in an ambulance. He had seemed fine at birth, perfect in every way. But he quickly started having trouble breathing. My husband, JP and our midwife went to the hospital with him, while I had to stay at the birth center for a few hours. It
I tried a few times to breastfeed him, but he couldn't latch on at all. We had to learn how to feed him with a Mead Johnson bottle, which was a huge emotional hurdle for me to overcome. Breastfeeding my babies was a huge part of my parenting style, and I wasn't about to just let it go! The lactation consultant at the hospital was of no help, and the doctors weren't very encouraging with regards to breastfeeding either. They all gave me a quick pat on the back and a sort of  "get over it" speech. I decided to pump, and hoped that once we got him out of the hospital that I could figure out someway to make breastfeeding work. I vowed to find someone who knew about breastfeeding cleft affected babies.

We left the hospital 7 days after Blake was born. He was eating okay, but we were told to have him weighed often at the doctor's office, to be sure he was gaining adequate weight. We had to take him home on an Apnea monitor because of his breathing trouble. It quickly became cumbersome trying to carry a baby and the VCR sized padded box, with wires hanging out everywhere. The apnea monitor often went off in the middle of the night because the connections were loose, sometimes even in the car!
Blake's first 6 weeks of life were very busy with doctor visits and such. My husband did a stellar job of getting us connected with the cleft team at our local Children's Hospital.  He got Blake had an appointment with our plastic surgeon on the day he was released from the hospital! I did my share of legwork with regards to the breastfeeding. I ran all over the city (and the internet!) trying to find someone, anyone who had experience with helping cleft affected babies breastfeed. After many appointments and lots of phone calls, I was so tired and discouraged. I eventually had to concede that maybe it just wasn't possible.

My last ditch effort was a few names and phone numbers I had gotten from La Leche League International. Supposedly these names were of active
was 5 long hours before the doctors finally discovered what was wrong with him, a complete cleft palate and micrognathia (small jaw). Blake's cleft was pretty severe. He had no soft palate at all, and very little hard palate.
Jp was given the terrible job of breaking the news to me when I arrived at the hospital. When he told me about Blake's cleft, I was stunned. We had no history of clefts in the family. My prenatal ultrasound hadn't shown the cleft, so we were completely unprepared. I was so sad and terribly depressed. I found myself feeling angry with Blake, and then I'd feel bad that I was upset with our baby! Every night when JP and I left the hospital, I'd cry much of the night. I tried so hard to hold myself together during the day, that at night I'd just lose it. I felt like my whole world was falling apart. No matter what anyone said to me, I still felt like somehow it was my fault that Blake had a cleft palate.

My excitement about breastfeeding another baby was quickly squashed. Blake had a really hard time with breathing, much less trying to breastfeed.
La Leche League leaders in California who had some experience with cleft affected babies. I randomly picked a name and called the number. All my trouble was about to be well rewarded, because I had "accidentally" been given the home phone number to one of the leading specialists in lactation in the United States. Chele Marmet, director of the world-renowned Lactation Institute in Encino California, was more than experienced with cleft issues, and I had just called her at home!!

Chele Marmet was about to become my very best friend for the next 7 months. After talking to her that first time, I made an appointment and drove up to Encino to see her. She taught me how to feed Blake with a periodontal syringe at the breast. The goal was for Blake to learn proper breastfeeding techniques so that that after his surgery he would be able to make an easy transition to normal breastfeeding. In essence we were tricking him into thinking he was "really" breastfeeding. Jp and I also learned how to "fingerfeed" him, using our finger and the periodontal syringe, which helped him unlearn bad sucking habits. It wasn't easy, and it sure worked better than the MJ bottle! He seemed more content and spit up less milk. I made many trips to the Lactation Institute for support and help with the syringe feeding.

Chele gave me exercises and variations to our "breastfeeding" routine, which were suppose to help Blake's jaw grow. It was truly exhausting work. I had to pump 10 to 12 times a day to maintain my milk supply. The lengthy process of feeding Blake was difficult and time consuming. It took about an hour for me to feed him, and then pump milk for the next feeding. The hardest part was having to start the whole feeding/pumping process over every two hours, to ensure that Blake was gaining enough weight.

Palate surgery crept up on us quickly. It was scheduled for December 20th, and Blake would be 6 ½ months old. He was the first surgery of the day so we had to leave the house really early. I was so nervous I couldn't stomach the thought of breakfast, but poor Blake couldn't eat for several hours before the surgery. Luckily he was so distracted by the busyness of the morning that he didn't seem to care. Our plastic surgeon came out and talked to us a little before he went to scrub up for Blake's surgery. I think he was trying to set our minds at ease, but not much was going to settle my mind down that morning!

Things got really difficult when it came time for Blake to be put under anesthesia. Our plastic surgeon had told us that they could do a "parent induction", or put Blake to sleep while one of us was there with him, but the plastic surgeon felt it was too risky with the size of his cleft. It was really
hard to hand my baby over to a nurse and walk away. She promised me that she would take good care of him, and I knew she would. But it was still one of the hardest things I've ever had to do. We went down to the cafeteria to try and eat something and to wait. The surgery was supposed to take about 2 hours, and our plastic surgeon was done right on schedule. When he came out to tell us how things went during the surgery, he said that Blake's skin was very thin. So thin in fact, that he had to hand tie all of the stitches. I was really sad and concerned that if Blake's palate tore or had a fistula (hole), he wouldn't be able to breastfeed normally. But the plastic surgeon said not to worry, that only time would tell how his palate healed.
It seemed like forever that we waited for them to bring Blake out of recovery, to move him to his room. The head nurse said Blake was having breathing trouble and they kept having to revive him!! My husband and I were furious that they wouldn't let us go back there with him. I think they were concerned about our reaction to his serious condition, but that made us all the more persistant about being with him. We finally set an ultimatum. Bring us our baby in 5 minutes or we will go running around the recovery rooms and find him ourselves. With 2 minutes left to go, they rolled out a pitiful looking thing that looked nothing like the happy little guy I had handed over only hours before. His whole body was swollen from the IV fluids, he had a nasal trumpet to keep an open airway, and he was obviously in a lot of pain. The nurses scrambled around us to get some
morphine in his IV to calm his feeble wailing. As I held him close and rocked him in his hospital room, my husband slipped out for a minute. My mom came in a few minutes later and said that JP needed some air. I found out later that my rock of a husband had seen enough. He walked out to the waiting room with tears in his eyes and told my mom that I needed her. He said that Blake looked really bad and to prepare herself, but that he just needed a break. It was really hard for all of us to see Blake in such pain. There wasn't anything we could do for him, but hold him and rock him, everyone felt so helpless.

We were really blessed to have our family at the hospital to help us. We didn't have to leave Blake alone for even a second. There was always someone there watching over him. After a few days Blake perked up. He was nursing fine (still with the syringe) and was off the morphine. We were able to convince the doctor to let us go home December 24th in the afternoon. What a great Christmas Eve present that was!

A few weeks after the surgery, Blake's stitches were finally dissolving. His palate was healing nicely, and miracously it appeared as though were going to make it thru with no tears or fistulas at all! January 25th 2000, 4 weeks to the day post surgery, I was sitting in my rocking chair getting ready to feed Blake. I was so depressed that he wasn't nursing without the syringe yet. I still had to pump and do all the things that I had to do before his surgery. I had started to think that breastfeeding would never work. But once again Blake amazed me, when he started nursing without the syringe. I sat very still with the syringe ready to go in my hand, thinking that it was a fluke. He fell asleep nursing and as soon as I put him down I called everyone I could think of to tell them what had just happened! Blake and I had an appointment with Chele the very next day and were able to surprise her with our exciting news! I think she was just as excited as we were, maybe more! We went on to be a happy breastfeeding couple for over 2 years.

Blake is now 3 ½. He is a charming little guy who has no idea what kind of an ordeal he put us thru! All he knows is that he likes to play with Miss. Brooke (the speech therapist), and that he hates letting the ENT look in his ears. He hasn't had to have any other palate surgeries, though he might need one in the next few years to help with his little chipmunk voice. Things have slowed down so much with doctors appointments and such that sometimes I forget that he was born with a cleft palate. I never imagined that day I was told that our son had a birth defect, that I would ever forget about it, much less that it would eventually feel "normal" to us.
A little note from Dad: I'm very thankful that Blake's cleft was of the palate only, which made it invisible from the outside, and that all of his scaring is concealed within his mouth. Yet I know full well that so many of you and your young ones don't have that luxury. So my encouragement is to remember the old saying, "It's not what's on the outside, but what's in the heart that matters." What I mean is, if you have to deal with you or your child having outward signs of having had a cleft lip and such, you are still a special person that
can make a huge positive impact in the world. Don't limit yourself and don't allow anyone else to limit you. If you have a young one that is going to grow up with scaring and difficulty, love them deeply and truly. They are your gift and legacy. They have a purpose, help them realize it.
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