Having a baby with cleft lip and palate can be a scary thing. The first point that you must know is that you are not alone. According to cleftline.org, one in 594 babies in the United States are born with a cleft each year. It is one of the most common birth defects. The second thing that you must know is that you didn’t do anything wrong. You are not at fault for your baby having this defect.
When I first found out about my baby, I felt like I had already failed as a mother. That is simply not the case. There are two different types of clefts. There’s a unilateral cleft, which means it’s only on one side, and there’s a bilateral cleft, which means it’s on both sides. Because the palate and the lip form separately, it’s possible to have a cleft lip, a cleft palate, or both.
My son was born with a unilateral cleft lip and palate. Because of this, he had no suction and could not breast feed or eat from a regular bottle. We had to buy what is known as a Habermen Bottle. This bottle has the base of a regular bottle but the nipple is in the shape of a cylinder and is separated from the bottle by a membrane. Using this bottle to feed the baby regulates how much food is given to them since they can’t control it with their sucking. We had to learn how to feed him with this bottle because it is very different from your typical bottle feeding.
According to Dr. Russell H. Griffiths MD, the baby has to be held up-right because if they are leaning back, the food won’t go down their throat. It will go up the cleft in the palate and into their nose.
No one knows for sure what causes a cleft. It can be a combination of the parents genetics or it could be something in your environment. Once your child has had it then their child will more than likely have one. Once you find out that your baby is going to have a cleft (sometimes they can tell in an ultrasound) then you’ll want to look for a surgeon. Once you find a surgeon then you will have a cleft team. A cleft team consists of:
- an audiologist (who assess’s hearing)
- a surgeon (such as a plastic surgeon, an oral/maxillofacial surgeon, a craniofacial surgeon, or a neurosurgeon)
- an otolaryngologist (an ear nose and throat doctor, or an ENT)
- a pediatric dentist
- an orthodontist
- a geneticist
- a nurse
- a pediatrician
- a psychologist
- a speech therapist
- and any other specialists that are needed to treat facial anomalies.
Your baby will need at least three surgeries if he/she has a cleft lip and palate. The first will be at two months old to repair the lip. The second will be at 13 months to repair the palate, and the third will be seven years old to place a bone-graft where the palate was clefted. They might need more surgeries if something doesn’t hold up well or needs a little more work. If the palate is repaired too early then the jaw will “out-grow” the palate and will cause it to “jut” out.
Having our son born with a cleft was difficult at first, but the thing I had to keep in mind was that he was a normal baby who just needed extra care. Feeding him started out being difficult but slowly became easier and easier. Now it’s awkward to feed a baby with a normal bottle since I’m used to the Haberman Feeder. Buying new Haberman Feeders was simple and quick. Medelabreastfeedingus.com sells them online. They also sell replacement parts for the feeder. The membranes are very small and slick, so don’t be surprised if you lose some.
The most difficult part about raising a baby with a cleft is the stares and the questions from other people. Many don’t understand what a cleft is and they don’t understand that it doesn’t hurt the baby. The baby doesn’t know any different, and it would be the same as you having a different shaped nose. Regardless of my sons cleft, I have never seen a baby smile more than he has throughout his life.
Many people you may know from movies, music, and television were born with clefts. According to a list on disabled-world.com, Cheech Marin, Peyton Manning, Jesse Jackson, Joaquin Phoenix, and Carmit Bachar were all born with a cleft. This is proof that clefts are more common than many believe.
Clefts are extremely commo, so do not be afraid to ask your doctors for answers or help. Just ask, and don’t worry about what’s in the future. The cleft team will help you through it.