You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.

This one is about: The Reality of the Miracle


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Here's a sneak preview in more ways that one.  As promised, for those of you who are expecting a first surgery soon, this article was written to give you a reality-based sense of what to expect. And it is also a sneak preview into the next issue of Wide Smiles.  Hope you find it helpful.

*******   THE REALITY OF THE MIRACLE  *******
          What to Expect from the First Surgery

by Joanne Green

When you learned of your baby's cleft, whether from a sonogram or in the delivery room, you were most likely shocked. And possibly angry, confused, and pretty much devastated. How could this have happened? What did I do to cause it? How are we going to fix it?

And then you begin to adjust. And whether you come to terms with the cleft right away or not, you most likely came to terms with the baby in no time at all. He is, after all, your child, and you love him. And before you know it you no longer see the cleft when you look at his face - you just see him. But you know the cleft must be fixed, and you are thankful for the miracle of modern medicine that will, in fact, restore mainstream normalcy to your baby.

The day of the surgery approaches. You have imagined this day for a long time. And as your imagination grew, so did your anxiety. But it is something you will get through and then put behind you. You are nothing if not ready.

In your mind, you will take your baby to the hospital and hold him in your arms until a friendly nurse comes and gently carries him to the OR. You wait a short time, and then the doctor emerges to tell you that everything went swell, and he brings your baby out to you, with a couple of cute little stitches on his lip and a big happy grin, because he knows somewhere deep down that this is, in fact, for his own good.

And I'm sure there is not a parent reading this who truly believes that this is the way it happens. And for any parent who has been there, they KNOW it doesn't happen this way.

Yes, it is done for your child's ultimate good. Yes, the results are most often quite good. Yes, the baby bounces back and is his old self again in no time. But the above scenario is fantasy. Now let's discuss reality.

You will be instructed to bring your baby to the hospital early. He will have to be fasting. That generally means nothing by mouth after midnight the night before. DO NOT break this rule, even a little bit. It is very difficult to know your child is hungry or thirsty, and to have nothing to offer him, but it is even more difficult to know that your baby is violently vomiting after surgery because there was something in the tummy that should not have been there.

So much for the baby peacefully sleeping in your arms. More likely your baby will be whimpering and whining for the bottle, and you will be frustrated in your inability to satisfy his needs.

Then the nurse comes to take your baby to surgery. Your heart strings may tug far more insistently than you had imagined. There's something about handing your child to a stranger and watching him go away that leaves you with a hole the size of the Grand Canyon to deal with.

And then you wait. And the waiting is never longer than the waiting you spend in that little room. Time stands still, and you check your watch a thousand times just to confirm that. And when time goes beyond that which you were told to expect, it becomes completely unbearable.

But finally, at long last, the pink lady tells you that the surgery is over. Then the doctor comes out to talk to you. He tells you that everything went perfectly.

So why, then, when you see the baby, does everything look anything but perfect? Your sweet, laughing, loving, trusting, happy baby of two hours ago is now sick and hurting. There is blood around the corners of the mouth. And when he opens his mouth to cry, there is even more blood (not much blood really, but a little bit of blood looks like a lot of blood - especially when it is your baby's blood.) There is swelling around the suture line, and the line itself is far longer than you imagined it would be. And there are about 20 tiny black stitches where you may have imagined maybe four. He's crying. He's angry. He's scared. And he appears to be sick. It's the affect of the anesthesia, but it can hit you like a ton of bricks.

And then you will take a good look a the face. Not the suture line, not the swelling, but the face. And you will be shocked at the difference you will see in your baby's face. Very few parents are initially thrilled with the surgery.

The baby will almost seem to be another baby. There will be a marked difference in the face. And it will take you a while to adjust to this new face. After all, you loved the old one!

The baby will likely be hooked up to an IV. The IV will either be in the hand, the foot or the head. If it is in the hand or the foot, the limb will be taped to a board to keep the baby from pulling the IV out. And as you hold your baby to comfort him, you will do a little dance around the IV tubing until your baby is taking in enough liquid to discontinue the IV.

Your baby will sleep most of the first day, waking up now and then, but mostly out of it. He will also feel hot to you, and he will be demanding pain medication every time it comes due. Your baby may not feel comfortable sleeping in the hospital bed. You may find yourself holding and walking your baby all night. But you will feel good that you can help your child in this way. He's scared, and he wants to know you are there, with him, so he can safely get the rest he needs.

Remember that most of the first day is affect from the anesthesia. By the end of the first day, and into the second day your baby will start to be more of his old self again. And sometime at that point you will get your first careful, tight little smile. That smile will mean the world to you.

Do your best to get your baby to take liquids. No small feat when you consider that you are not allowed to use a spoon or a nipple. At first you will be dripping it in with an eye-dropper, but soon you should graduate to an oral syringe. Be ready to be the one to feed your baby. He is more likely to take it more readily from you than the strange nurse who keeps doing yucky things to him.

And the suture line will have to be kept clean. Learn to do it yourself as soon as you can. You will be the only one to do it once you get back home.

The arm restraints will also seem clumsy to you. These sleeves are vitally important to protect the newly healing suture line. You will find that if you accept them as a necessary part of the process, your baby will too. Make certain that they fit properly and secure them to the shoulders of the baby's undershirt if you have to.

In about two to three days you will be taking your baby home. And a few weeks after that the restraints will come off. The first surgery is behind you. You and your baby have survived. And you will look back and notice that you didn't do half bad, either.

The next surgeries will not be any easier emotionally, but you will be better prepared to face it. You will, by then, be a veteran of the waiting room, and you will have some idea of what to expect.

The reconstruction of our children's faces is nothing short of a miracle. But it is a miracle with a basis in reality. Surgery is, without a doubt, the worst part of dealing with a cleft. But it's generally harder on the parent than it is on the child. And it's at least a little easier on the parent when you know what to expect going in.


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