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This one is about: New Parent's FAQ
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Frequently Asked Questions When the Baby Has a Cleft!
Your long-awaited baby is here. You planned this day for so long. And there is a problem. Nobody cheered when your baby was born. Everyone in the delivery room grew quiet. Somebody said something about a birth defect, and you didn't hear much after that. And then you saw your baby. And right in the middle of the face, where a beautiful little rosebud lip ought to be, there was a gaping hole. And now you have a hundred questions and a baby you are not sure you can take care of.
The following are some of the questions you may be asking, along with some common-sense and straight-forward answers. If your question is not answered here, feel free to call Joanne Green, editor of WIDE SMILES Magazine and mother of three cleft-affected children.
The most common questions a new parent has about cleft:
Q. What caused my baby's cleft?
A. A cleft is most commonly caused by a combination of several factors. In most cases, genetics plays a role, although sometimes not the only role. There may be a number of environmental factors as well. The most important thing to recognize is that most likely, you did NOT cause the cleft. A cleft happens in one in every 700 births. It happens all over the world. It is the fourth most common birth defect. You will want to see a geneticist who will try to gain a clearer understanding of just what factors contributed to your baby's cleft, but very often the final answer is "We don't really know."
A cleft is formed by the 4th - 8th weeks of pregnancy. Many women do not even know they are pregnant before the cleft has been formed. A cleft happens when the tissues of the face fail to fuse during gestation. It is a repairable birth defect.
Q. How will I feed my baby?
A. You may have some difficulty finding the best way to feed your child at first, but rest assured that with patience and perseverance, these babies do get fed.
First, if your baby has a cleft palate, you may have a very difficult time breastfeeding. In fact, it is rare for a baby with a cleft in the palate to be able to breast feed at all. However, this does not mean that you cannot give your baby your breast milk. You may choose to pump so that your baby can still get the benefit of human breast milk. Contact your local La Leche League or a Lactation Consultant for assistance with pumping.
There are a number of bottles available that can be used for feeding the cleft-affected baby. The most commonly used bottle is called the Mead Johnson Cleft Palate Nurser. This is a flattened, squeezable bottle with a longer, cross-cut nipple. Feed your baby in an upright (at least 45 degree) position. Present the nipple to your baby. As your baby tries to nurse from the bottle you will watch his jaw compressions. Gently squeeze the sides of the bottle in time to the jaw compressions. Your squeezing will deliver milk or formula to your child at the same rate that normal nursing would. Mead Johnson bottles are inexpensive (about $2.00 per bottle) and can be ordered through your hospital pharmacy.
Another bottle designed especially for cleft-affected babies is called the Haberman Feeder. This special bottle has a unique valve system and slit nipple that allows the baby to control the flow of milk. The Haberman can be purchased through your regional Medela representative. The Haberman is somewhat expensive at a cost of $15 - $20 per bottle.
Many parents have had success by using a large Nuk nipple with a cross-cut hole (they have to make the cross cut themselves), turned upside-down. Still others use a dixie cup to pour droplets of milk onto the baby's tongue.
You will want to experiment until you find the method that works best for you and your baby. If you have problems feeding your child, ask your doctor for a referral to an occupational therapist, and/or call the WIDE SMILES number for more suggestions.
Q. How and when will they fix that hole?
A. You will meet with a team of medical professionals, called a Cleft Palate Team, or a Craniofacial Team very soon. This team consists of a Pediatrician, a Plastic Surgeon, an Audiologist, a Speech Therapist, a Pediatric Dentist, an Orthodontist, etc. This team will consult together on a plan to meet all of your baby's needs.
The timing for repair varies with the doctor and with the child. However, most of the time a cleft lip is repaired at around 10 weeks of age, if the baby weighs at least 10 pounds at that time. The cleft in the palate is repaired at about age 9 - 12 months. There will likely be a bone graft at around age 9. There is no guarantee that those will be the only surgeries your child will have to repair the cleft. Many cleft-affected children have revision work done as they grow. Rhinoplasty is also common. There may or may not be some speech-related surgeries or palate-lengthening surgery. Your plastic surgeon can give you a better idea as to what you might expect for your child. Just remember that it IS repairable, and that each surgery will only improve upon what is already there.
Q. Will my baby be retarded?
A. No. Unless your baby has an underlying syndrome that includes both cleft and retardation, or unless your baby has a cleft and an unrelated condition that results in retardation, you can expect your child to grow up to be a normal, healthy individual. The majority of clefts are what is called, "isolated clefts". That is, they are clefts that are unrelated to any other syndrome or condition. There is no reason to suspect retardation.
Q. Will my baby have other health concerns?
A. For the most part, your baby is just as healthy and normal as any other baby. It is just that for some reason or another his/her lip failed to fuse when it was supposed to. A cleft baby is more prone to ear infections because the Eustachian Tubes are usually affected by the cleft and do not drain the fluid from the middle ear properly. Most cleft-affected kids avoid unnecessary infections by having a myringotomy with tubes (ear tubes) done early on - often at the same time that the lip is repaired.
And now a note from me - Joanne Green:
First, I want to congratulate you on the birth of your new baby. A baby is a special and unique joy in our lives, and your baby is no less so in yours.
Look at your child. Look at those beautiful, gentle eyes, that soft skin, that downy hair. Hold him close to you. Smell his baby scent and know that he is yours. For you see, your baby is a baby first, and cleft-affected second.
Your baby needs the same thing from you that every other baby needs. He needs you to hold him and cuddle him and sing to him and kiss his soft skin. He needs to bond to you and you to him, because he doesn't know that his cleft makes him 'different'. He only knows that that warm body lying next to him is Mommy and he needs you and your love more than he needs anything else in this world.
He may not be the baby you pictured in your dreams, and you will grieve and long for the expected child that you did not have. But the child that you have in your arms is your treasure. And he is beautiful - as beautiful as any baby who ever graced the face of this earth.
While you struggle with your grief, and while you strive to educate yourself about your child's condition, don't forget to take a moment to just enjoy your child.
If you need to touch base with another parent, call me. 209-942-2812. I'd love to talk with you. If you have questions or want to find other resources, I can help you with that. Parent-to-parent, we can help each other. It is a path well-traveled that you are walking on now, and there are many of us who would be happy to help you along.
*** BE NOT AFRAID, YOUNG MOTHER ***
Be not afraid, young mother,
And do not feel so all alone.
There are others who've traveled
The road you now walk.
We'll gladly help guide you along.
Be not disheartened, young mother,
For days of unknowns full of dread.
For though there be trials
There also lies joy up ahead.
Be not discouraged, young mother.
We know of your loss, pain and fear.
But behind that dark cloud
Looms a rainbow of love
That will shine for you year after year.
Be touched by your joy, young mother.
For that beautiful baby, your own!
And no matter the challenges
That may lie ahead,
Neither you nor your child are alone.
Send your e-mail to me at JoSmiles@aol.com
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