About a year and a half ago when our daughter was two, we discovered that she had a submucous cleft palate. What is a submucous cleft palate? Here is a definition from cleftline.org
A submucous cleft palate is one type of cleft palate. The word "palate" refers to the roof of the mouth and the term "cleft" indicates a split in the palate. The palate consists of both a bony portion (hard palate) and a muscular portion (soft palate). At the end of the soft palate, the small finger-like projection of tissue that hangs down is called the "uvula". The term "submucous" refers to the fact that the cleft is covered over by the lining (mucous membrane) of the mouth. This covering of mucosa makes the cleft difficult to see when looking into the mouth. Thus it becomes difficult to diagnose. The Dr explained to us that he doesn't actually see the muscles split. When he shines a light into the mouth, he looks up at the roof of the mouth to see if he sees a blue line going from the front and stretching to the back. That, he said, is an indication of a submucous cleft palate.
So in all practicality, what did this mean? Well, we knew something was not quite right because right from the start she had great difficulty feeding. Moments after she was born I tried to nurse her and she was barely able to latch on, let alone suck properly. She made a sort of a clicking sound with every suck. I am not sure if her tiny and very week cry was connected to all of this, but for the first few months of her life she actually sounded like a little mouse with quiet squeaks when she would cry. The nurses said they have never seen (or heard) anything like it. She even struggled to latch onto and suck from the bottle. I remember trying every trick in the book, working with a few different lactation consultants to try to be able to nurse her, but with no success. I would cry, she would cry because she was tired and hungry, then I would pump the milk, still teary eyed, and try to use the SNS. - Supplemental nursing system.
I remember smiling and half laughing with tears in my eyes saying to my mother, "With all of the pumping, tubes, and shields there is absolutely nothing natural about nursing here!"
I did eventually fall into a routine of pumping for her, but I kept hoping she would eventually be able to nurse. (I think not letting go of the fact that she could not nurse wore me out. To me nursing is an extension of the umbilical chord, so I guess you can say it's very dear to my heart. It's a bond that I cherish, so there were a lot of tears during the first few weeks after her birth.) She fatigued too quickly while she was eating, so the rest of her meal I would feed her through a medicine dropper. Her food would also often go through her mouth and come up and out through her nose, causing her to choke and have difficulty breathing. I would feed her, propped up, holding the bottle in one hand and a suction to suction her nose out with the other to help her breath as the milk would come up through her mouth and nose. It almost seemed like there was a hole going from somewhere in the back of her mouth straight through to her nose... which we later found out, there pretty much was. Feeding her was a whole song and a dance, so much so that at one point I was ready for a feeding tube, but we did manage to keep her in the 10th percentile in weight.
Later, speech became an obvious problem. For the life of her she simply could not make most of the sounds. Looking at her I knew she completely understood what we were saying, and what she wanted to say, but just couldn't. Together with a fabulous speech therapist we began teaching her sign language. In no time at all she mastered about 100 signs, which soon became to 200 +. At the recommendation of her speech therapist I took her to a local baby sign language class. It was there that I met a mother who asked me why my daughter was not talking. I told her it was because she seemed to have a high palate, to which she responded there was no such thing. I described her symptoms and she told me to make an appointment with a specific Dr In the plastic surgeon department and ask him to look for a submucousal cleft palate.
Currently I think there are only two ways that they make the incision to do the repair. One is done by doing pretty much one straight cut, and the other, older method is called the radical method, in which they do a zig zag incision. I spoke with two different mothers who had the radical method done and they told me that later on, each of their children had to go back for a repair. After some quick research I did manage find a doctor in the same group who did the straight incision.
A couple of weeks later we were sitting in the Dr's office, waiting for the Plastic surgeon to enter. An incredible speech pathologist walked into the room with the plastic surgeon They were very professional, asked a few targeted questions and then the speech pathologist took a look in her mouth.
"Oh yes, I see it. She definitely has a cleft palate."
I was so relieved we finally got to the bottom of her symptoms. Next we began discussing the option of surgery and its procedure. It sounded very intense. The operation typically takes about 90 min. They cut open the roof of the mouth to get to the split muscles and sew the muscles together. The kids stay overnight in the hospital for about 4-5 days. When they go home they are sent home with arm bands to prevent their elbows from bending. This is to prevent the child from putting anything into their mouths that may split the stitches. In order to allow the stitches to heal properly they may only have clear fluids for about one week, and just liquids after that until a follow up appointment to confirm that the incision area has healed. This typically takes about one month, in rare cases a bit longer. ...In my daughters case, because of her unusually thin skin, it took her 3 months.
We scheduled the appointment as I saw she was continuing to struggle with speech (still only two speech sounds), and eating was draining... but I was scared. I wasn't sure if I was making the right decision. To put her through that? I found two other mothers who, their own children also had this procedure. They were able to tell me a little bit more about what to expect. I was still scared. At one point I almost canceled the whole thing. Yes, I realized that in the long run, this would require her to be in speech therapy for many, many more years, and eating may always be tiresome for her, but my emotions were beginning to get the better of me. Yes, we were still going through a whole song and a dance to feed her (I had an enormous supply of medicine droppers and syringes), and get the right amount of calories into her, but never the less, we were doing it. She was managing to stay in the 10th percentile, and we were avoiding a feeding tube. I felt like I could continue feeding her the rest of her meals through a medicine dropper as long as she needed it. I was just too scared to put her through the surgery. Finally I called an older and wiser mother of many children and told her what was going on. She listened, then told me that the Lubavitcher Rebbe would often tell people to get a second opinion, specifically from a Dr who knows your family, whom you know and trust, and go with that advise.
"Find another Dr who knows you and your family well, one who you truly trust. Ask him his opinion and do what he says." she told me.
So I did. In my mind, I truly did not want to go through with this, and was on the verge of canceling, but I told myself that I will follow his advice no matter what. My husband contacted another Dr whom we really trust and who knows our family well. After explaining everything to him, I was a bit surprised when he told us to definitely go through with the surgery, but oddly enough I felt calm about it. I figured I would follow the advise of the Rebbe, and just put my trust in G-d. Surgery was scheduled for one week before Rosh Hashanah.
We arrived at the hospital and were called back and admitted pretty quickly. I was suddenly so nervous I felt like it was me going into surgery. I got her into her hospital gown and just talked to her and gave her hugs. She knew something was up but obviously did not understand exactly what. They gave her a little verset (I should have asked for some for myself! I really wanted to ask the Dr for some but I figured he would think I was nuts). As soon as the verset began to kick in, my husband carried her to the surgery room and stayed with her until she was fast asleep. As they walked down the hallway she looked back at me and cried the whole way. My heart was breaking.
About an hour and a half later the surgeon came out to tell me that the surgery was a success. Thank G-d. It was over. I went back to recovery and sat down next to her. They had her on some serious pain killers, as she was still very groggy from the surgery. Her mouth and lips were swollen and there was blood trickling from her nose and mouth. It was not that much blood but to a mother looking at her child, barely conscious, swollen and in obvious pain, it looked like a lot. For the next three days in the hospital I kept wiping up her blood, held her, rocked with her, tried to distract her, from her constant pain, IV's, sang to her..... I did whatever I could to keep her as comfortable as possible. She truly looked miserable, but thank G-d the Dr didn't hesitate in prescribing her more pain killers. They told us that typically the kids stay about 5 days, or until they can drink enough liquid by themselves so the I.V. can be taken out. She was not allowed to suck from a sippy cup or bottle, as the sucking motion would split the stitches. By day number 3 I was so dizzy from lack of sleep and food. I began to slowly give her liquids through a medicine dropper again, since her mouth was too swollen to drink from a cup, and she hadn't mastered that anyway, and again, a bottle was not an option because the sucking would strain the muscles and split the stitches. We had success with the dropper. I figured the sooner we could get home we can all get more rest, and recovery (with a lot of pain killers) should go a bit smoother. Thank G-d we were able to leave the hospital the morning of day 4.
I tried my best to keep the arm bands on her. By week number 3 my little Houdini was a master at slipping out of them. We even taped them to her shirt, but she got around every trick in the book. Instead of fighting her I just kept a very close eye on her and made sure the house was constantly clean with nothing she could possible put in her mouth. Meal times were a bit stressful since she was upset she couldn't have anything, so I would often hang out with her in a different room. (Remember, this was holiday time.) She pretty much lived off of apple juice, hypoallergenic formula mixed with rice milk (for extra calories), and yogurt until we got the ok to begin eating crunchy foods.
I would like to add here, that these children can only go to a special orthodontist who is experienced in handling fragile or thin skin and muscles. If the child needs an expander or other orthodontic work, remember that you want to be very delicate with the skin and muscles. We were advised that when the time comes, we should stick with the pediatric orthodontists in the hospital.
Was the surgery a success? Thank G-d yes! One week after surgery she looked at me and said "Mommeee". The only sounds she was able to make prior to the surgery was the "Ahhh" sound and the "Mmmmm" sound. As the swelling went down and time went on, she slowly began making more and more sounds. It was really exciting when she learned that all of the signs in sign language that she had learned she was now able to say them! And if we still had trouble understanding her, she would pull out a sign for us. It was pretty cute. Eating also became less tiresome for her.
It is now almost a year and a half after her surgery and she has finally reached the 50th percentile on the growth chart and is talking up a storm. I am glad we went through with it, and forever grateful for the wonderful doctors, the guidance and timeless advice we received to encourage us to properly help her. I hope in writing this to somehow help and encourage other parents who may find themselves on this path.
- Matana B.
The picture below was taken about 2 months before her surgery.
