My Experience with Cleft Palate, with Educational Videos

Melissa was born with a cleft palate.
Melissa was born with a cleft palate.
Melissa, Cory, Jonathan, and Tristan.
Melissa, Cory, Jonathan, and Tristan.

What's wrong with my baby?!

My experience with cleft palate

When I was twenty-four years old, I was expecting my third child. I already had two beautiful, healthy, normal daughters, so I wasn’t the least bit worried about number three. The pregnancy had progressed perfectly normally. My only complaint was that it lasted too long!

My first daughter had been born a few days early, and the second was born on the exact day of her expected arrival. Number three was taking her time, however. She was due on February 18th, and when that day came and went, I decided that this little munchkin was never going to enter the world. I went about my normal routine, hoping the activity might spur some contractions. On February 25th, I helped my husband on the farm, carrying buckets of water to the pigs, throwing hay to the cows, and hauling bags of feed to the horses.

Some time around one a.m. the next morning, my back began to hurt. With my other two babies, my labor had been induced, so I had no idea what natural labor felt like. I got into the tub, thinking my backache was due to overexertion on the farm. The warm water seemed to alleviate the pain, so I returned to bed. It wasn’t long, however, before the pain started again.

My ex-husband insisted we go to the hospital. I tried to assure him that I was not in labor – the pain wasn’t bad enough. He stated that he did not want to deliver a baby at home, and he practically forced me to go to the hospital, which was almost twenty miles away. I finally consented, but I was sure they’d send me home.

We arrived at the hospital at 2:30 a.m. I was amazed to learn that I was in labor. In fact, I had dilated to seven centimeters! The OB team got in gear preparing the delivery room. It’s a good thing they did! The baby was born at 2:42.

This was before parents knew the sex of their children before birth, and my husband was hoping for a boy. I had felt all along it was another girl, which was fine with me. Sure enough, the baby was a beautiful girl with a headful of bright red hair. We named her Melissa. They let me see her for a moment before scurrying her away to the nursery. She had all her fingers and toes and looked perfectly normal. I was tired and fell asleep almost immediately after being returned to my room.

The next morning, I woke up, cleaned up, and ate breakfast. I waited and waited for the baby to be brought to me. I finally buzzed for a nurse. I asked to see the baby, and she told me the doctor would be in to talk to me soon. That’s all she would tell me.

I was petrified. I knew something was wrong. Worst of all, I was all alone. My husband had gone home to get some sleep and attend to the animals.

My baby has cleft palate.

After another hour or so of worrying, the doctor came in and sat down. He informed me that there was a problem with the baby. She was born with a cleft palate. I wasn’t exactly sure what that was. I knew what a cleft lip was, but I didn’t remember her having a cleft lip. He explained that her cleft was in the soft palate and in a portion of the hard palate. Fortunately, neither her lips nor gums were affected.

After he left the room, I was alone again, and I cried uncontrollably. Why did my baby have cleft palate? What did I do wrong? Am I being punished for something? All kind of thoughts run through your mind with news like this. I called my husband, and he came to the hospital.

 

What causes cleft palate and cleft lip?

Over the next day or two, I questioned any doctor or nurse who entered my room about cleft palate. I wanted to know exactly what it was and exactly what caused it. This is what I was told:

As babies develop in utero, there’s a “suture line” - a sometimes invisible line that joins two halves together. You can see this in the scrotum on little boys. The palate is another part with a suture line. When the two halves don’t completely join in the palate or lips, the result is a cleft palate, a cleft lip, or cleft gums. “Cleft” simply means “division.” Some babies might have all three conditions.

At some point in the development of the fetus, the two halves don’t fuse together. Usually, the lip, the gums, and the hard and soft palates are affected. The lip forms before the palate. Melissa’s lip formed completely, as did her gums, but then something went wrong before her soft palate could fuse. Her hard palate was almost complete, but not totally. This resulted in a cleft palate.

Sometimes cleft lip and cleft palate are part of syndromes that include other deformities. When a cleft happens in isolation, however, the causes are difficult to pinpoint. Sometimes the conditions are prevalent in families, but there had been no known cases of cleft palate in either my family or in Mel’s father’s family.

Vitamin deficiency is another cause of cleft lip and cleft palate, but I took my prenatal vitamins religiously. Exposure to lead, solvents, and pesticides have also been linked to the cleft palate condition, but I hadn’t been exposed to any of these. Abuse of alcohol and drugs like cocaine and heroin can cause clefting, but I wasn’t a drinker or a drug user. Some studies have linked smoking and hypertension to the malformation, but I didn’t have high blood pressure, and I rarely smoked when I was pregnant.

The doctors told me that about one in every seven hundred babies is born with either a cleft lip, a cleft palate, or both. They assured me that I had done nothing wrong. Many times, a cause is never identified.

 

Feeding a baby with cleft palate

The biggest problem we had was getting Melissa to eat. Since she didn’t have a roof in her mouth, she couldn’t suck. We were trying to use a cleft palate hooded nipple on the bottles, but it just wasn’t working. They were about to insert a feeding tube when I came up with an idea. I asked them to bring me a bottle fit with a preemie nipple. They scoffed, but I insisted. It worked like a charm! The nipple was very soft, so the slightest pressure would start the formula flowing. Melissa's cleft palate did not inhibit her sucking the soft nipple.

In every other aspect, Melissa was perfectly normal and developed faster in some areas than my other two girls had. For example, this little redhead could roll over by herself from birth. She was walking at nine months, too, so I figured she was going to be very athletic. Eating was her biggest problem. When she began eating baby food, it would sometimes come out her nose instead of down her esophagus. This was due to the cleft palate.

 

Cleft palate surgery

My cousin Jean, who was in the health care field in Atlanta, suggested we take Melissa to a doctor there. Jean had seen him work miracles on burn patients, so we made an appointment with Dr. Huger, a pediatric plastic surgeon. He scheduled surgery for Mel's cleft palate at Emory’s Children’s hospital, Egleston.

My husband, my mother, Melissa, and I traveled to Atlanta. We checked into the hospital and were placed in a room with three other children who were awaiting surgery.

This was a real eye-opener for me. I had felt so sorry for myself since Melissa was born, but compared with these other kids, Melissa’s cleft palate was like a skinned knee. One little girl had a life-threatening brain tumor. Another roommate had a spinal condition that made it impossible for her to walk. The most tragic was a little boy named Kenny.

Kenny had been born with a rare type of glaucoma. His left eye was the size of a baseball. He was only eighteen months old, and the giant eye made him look monstrous. I’m not being mean – I’m being honest. Kenny’s parents were very young, and this was their first and only child. We learned that Kenny had already undergone numerous surgeries, but this upcoming one was the one the parents had long awaited. The hideous eye would be removed and the toddler would be fitted with a prosthetic eye, making his appearance normal. Dr. Huger was performing Kenny’s surgery, too.

Kenny’s surgery was done right before Melissa’s cleft palate repair. We waited anxiously with his parents, as we had struck up a friendship with them. Finally, the doctor came in and called the young couple into the hall. They soon returned in tears – Kenny’s lungs had collapsed, so the surgery couldn’t be completed. I felt so sorry for them, and I began to worry about the same thing happening with Mel.

It seemed that Melissa was in surgery for hours. I don’t remember how long the cleft palate repair surgery actually took, but I was relieved when Dr. Huger came in smiling. I’ll never forget his words to us: “She did great! She’ll be kissing sweet and rattlesnake mean!” Boy, was he right!

For the next few days, Melissa was in extreme pain. After her palate had been constructed and sewn together, a pack had been secured into the roof of her mouth with sutures. She cried and screamed almost nonstop. She was given morphine, but it didn’t seem to have any effect, so she was given more. The nurses told us that the pain was over-riding the drug, but they could not give her more because it would be too dangerous.

Once the pack was removed, Melissa was much better. She stopped crying and began to play and act like a normal toddler. In another day or two, we were allowed to go home.

Melissa healed wonderfully. Her mouth now had a roof, and Dr. Huger had even made her a uvula. The worst part of her healing time were the arm splints she had to wear for several weeks. They prohibited her from bending her arms so that she couldn’t reach her mouth. When we returned for the post-op visit, the splints and sutures were removed, and Dr. Huger was pleased with the operation. He did warn us, however, that she would be prone to chronic ear infections.

 

Cleft palate and speech

Mel continued to develop normally, except for her speech. There were certain sounds she could not make because the roof of her mouth was so high. She couldn’t make the “sh” sound or the “k” sound. Neither could she make the “s” sound at the beginning of words. “Shoes and socks” came out “hoes and hoss.” We saw a speech therapist and got Mel enrolled in speech lessons.

The speech lessons didn’t help. I thought we could accomplish more at home. I figured if Mel could make the “s” sound at the end of words, we could teach her to make it at the beginning of words. Her two older sisters, Shannon and Mandy, worked with her all the time, as did I. In just a couple of months, we had her using the “s” at the beginning of words. With a little more work, she learned to make the “k” sound, too. By the time Mel started kindergarten, her speech was perfectly normal!

Cleft palate and ear infections

She was, however, plagued with chronic ear infection. She had several tubes put in, and it seems like she was always on some antibiotic. By the time she was a teenager, her hearing was seriously damaged, especially in her left ear. We were seeing a local otolaryngologist, Dr. William Hayes, on a regular basis. We loved Dr. Hayes. He was Irish, and I loved to hear him talk. He was very knowledgeable, too, and a gifted surgeon, which we came to fully appreciate later.

Cholesteatoma and ear infections

 

Melissa began having extreme pain in her “bad ear,” along with severe headaches. Dr. Hayes discovered that Mel had a cholesteatoma – a tumor on her mastoid bone. This is a dangerous condition in which the tumor can actually enter the brain, so we were worried sick. We had complete faith in Dr. Hayes, and the surgery was scheduled at our local hospital.

It went fine, but it was pretty grisly. Melissa’s left ear was actually removed. Then the mastoid bone was scraped, and the ear was re-attached. The outer ear that had been cut off and sewn back on didn’t bother Mel much. What was so painful was the packing that had to be placed in the ear canal. Once it was removed, she felt much better.

Dr. Hayes warned us that the cholesteatoma would probably return, and several years later, it did. By this time, Dr. Hayes had retired, so we took her back to Emory. After examining her ear, the surgeon demanded to know who had done her prior surgery. I hesitantly told him, and he replied that it was one of the best he’d ever seen! He explained because of the way Dr. Hayes had done the surgery, there was no chance of a cholesteatoma every entering Mel’s brain. That was a huge relief! This guy did a fairly quick surgery, and Mel hasn’t had another tumor since.

Americans with Disabilities Act and 504 plans for hearing impaired students

All the chronic ear infections took a toll on Meissa’s hearing, however. The eardrum in her bad ear is withered, and she’s almost completely deaf in that ear. Hearing aids don’t help. In school, Melissa would often have difficulty hearing the teacher, so we always asked that she be placed near the teacher, and to the right of the teacher. This worked pretty well, but we also asked that her assignments and other information be given to her in writing. Since Melissa was covered by the Americans with Disabilities Act, or ADA, the teachers were required by law to make certain provisions for hearing-impaired students. In schools, this is usually referred to as a 504 plan.

Melissa was a well adjusted, successful high school student. She was a cheerleader, an accomplished gymnast, and a member of the Key Club. She was selected as a Senior Superlative by the faculty and as a just-for-fun Senior Superlative, where she was voted by her peers as being “Most Sarcastic.” I’m very proud to say that Melissa was an honor graduate, too!

Online College for the hearing impaired

Unfortunately, we discovered that colleges are not as likely to follow the ADA law or a 504 plan. We sometimes had to beg and threaten to get professors to give assignments in writing or to make other adjustmants regarding ADA compliance. We never asked for anything outlandish - we just wanted an ADA reasonable accommodation or two.

After graduating from junior college, Melissa began attending online college, and this worked out great. With online classes, the Americans with Disabilities Act and the 504 plan were moot points. Everything with online college is in writing! And if there’s a lecture she needs to listen to on the computer, she can put on the headphones and turn up the volume as loud as she wants. With college classes online, she can hear a taped lecture as many times as she needs.

There really isn’t an ending to this narrative, because the saga continues. Mel still has occasional ear infections, and she’s still attending college online. I’ve decided that she’s a career student. She’s married to Cory and has two beautiful little boys, Jonathan and Tristan. She’ll soon be adding a little girl to the family – she’s due in about twelve weeks. Mel works full time as a medical transcriptionist. When she graduates in a couple of months, she’ll be a Registered Health Information Technician. Then she’s continuing online college for an add-on certificate in order to become a Certified Tumor Registrar. After that, who knows? She might decide to go to medical school. I told you she was a career student!

Cleft palate repair and ear infections

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Comments 17 comments

ralwus 6 years ago

Holle, I am glad I signed in and saw this posted. It is a blessing to read stories like this. Bless you and her as well as her young family. heartwarming it is.xox CC


WildIris 6 years ago

Habee,

You've provided an invaluable resource to new parents needing a perspective on caring for a baby, child, and adult child born with a cleft palate. Taking a proactive approach, particularly with the speech therapist is an important step to be aware and to take action on before a child becomes school age.


Veronica Allen profile image

Veronica Allen 6 years ago from Georgia

Wow habee. I can only imagine what you went through. I had no idea that cleft palat could cause so many problems. Thank you for sharing this information with us. It's really great that you took a proactive approach and addressed the situation head on. I have no doubt in my mind, that your daughters success and recovery was due to a combination with her own internal strength, with the positive steps you took to make sure she recieved the best possible care availble.


Ann Nonymous profile image

Ann Nonymous 6 years ago from Virginia

What an amazing story, habee! God bless you for sharing and bless your family with strength, like you I've heard of cleft lip but this... I never imagined this could be so life altering! AMAZING story you have here!


habee profile image

habee 6 years ago from Georgia Author

Thanks, Charlie. Love you!


habee profile image

habee 6 years ago from Georgia Author

Thanks, Iris. I think too many parents expect only the professionals to handle things, but parents can make a huge difference!


habee profile image

habee 6 years ago from Georgia Author

Thank you, Veronica, for your kind words. Melissa is a very strong individual. I don't know if that's in spite of her struggles or because of them!


habee profile image

habee 6 years ago from Georgia Author

Thanks, Ann. So glad you stopped by!


Kaie Arwen profile image

Kaie Arwen 6 years ago

habee- very touching, you have an amazingly strong child, and she has been blessed with a very strong mother! Thank you for sharing!

Kaie


habee profile image

habee 6 years ago from Georgia Author

Thank you, Kaie, for your kind words!


prettydarkhorse profile image

prettydarkhorse 6 years ago from US

oh habee, I cant imagine your fears, yet you're strong and look at her, beautiful, Maita


P Morgan profile image

P Morgan 6 years ago

Our neighbor's adopted son was born with this. Glad there is help available.


habee profile image

habee 6 years ago from Georgia Author

Thank you, Maita. Thank God the worst of that is behind us!


habee profile image

habee 6 years ago from Georgia Author

Thanks for reading, PMorgan!


Morris  5 years ago

Hi my name is Morris thank you for sharing your personal information. I have a new born and we have a similar problem and I hope we can be as strong as you were.


vslandego profile image

vslandego 4 years ago from Canada

I love hearing stories about others going through the same Journey as us. Costin was born with a complete Cleft. We posted his journey on Youtube @ Vslandego I hope our journey and your journey can help others :)


Bethany 4 years ago

Hi, I have been looking around for mothers who have children born wtih cleft palate. My son is 2 now, and was born with it as well. I have questions regaurding speech, due to my concern for his speech being so high.

If someone could email me at tldtexas2000@yahoo.com Id greatly apprechiate asking some questions for more comfort on situation.

Thanks, Bethany

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