What are the mental health affects of having a cleft lip or other deformity?

Our appearance is a central concept to how we perceive ourselves and other perceive us. Since cleft lip is a common and is a up front (literally on the face) deformity there has been a lot of research on how these children do throughout life. The first thing to know is most of these children do fine with no intellectual or emotional problems. A small number do have problems that affect the group as a whole. In infancy, cleft lip children have been found to have slight delays in motor and intellectual development. As they progress into school they have a higher rate of learning disorder--particularly reading--as well as the expected difficulty with expressing themselves with language. This has led to an over-diagnosis of Attention Deficit and Hyperactivity Disorder (ADHD) in these children so any cleft lip child should have a thorough neuropsychological evaluation before being diagnosed with ADHD. Throughout the school years they tend to be shy, and teasing and bullying can be a problem. As adolescents - a troubled time for any child- they are more likely than others to be dissatisfied with their facial appearance which has had an affect on their social skills. They also are more prone to anxiety and depression than the adolescent group as a whole. Once again most children will be fine but as a group not surprisingly they have more problems and any mental health diagnosis like ADHD should be carefully reviewed as well as possible depression or anxiety in the older child.

Cleft lip and palate- long term care

After the first three or four months the surgical team will begin to do a multiple surgeries over the next 16 years to provide the baby with a fully functioning lip, nose and palate that looks a cosmetically good as possible as an adult. The lip gets repaired first around 3-4 months followed by the initial palate repair at 9-12 months. At 6-8 years they take bone often from the child's hip and use it to create some of the jaw and palate by bone grafting. Then between 8-18 years multiple revisions including surgery of the nose are done to create a normal appearing face.

So why wait those first couple of months? The first reason is to let the baby grow both for better healing but also because older children have less risks under anesthesia. In addition the team harnesses the growth that is occurring during that time to make the surgery easier and better. By using a technique called Presurgical nasoalveolar molding- PNAM- trying saying that 3 times quickly!) where a very specialized orthodontist produces molds that guide the ongoing growth of the baby the mouth can be molded to allow an easier and safer surgery when it is done. The molds are created with plastic and individuadized to each baby with modifications as time goes on. In addition the cleft lips are taped together to get the skin to stretch so that it is more flexible when the surgery is done. The molds are held in place by cushioned wires that rest in the babies nose ( kinda like the wire used in braces and retainers). These molds also go a long way to straightening the nose and lips up into the positions they will be when the surgery is done.

Many folks find that their babies have already had the surgery when they get them from China. One of the reasons for this is because the children are usually older when adopted and the need to be able to feed is critical for growth. In fact due to how frequently cleft lip and palate occurs in Asians perhaps the best surgeons worldwide are in China- one of the speakers at my conference mentioned to me the Shanghai 9th Peoples Hospital where one surgeon has probably done 10,000 of these surgeries! But with so many children across the country not all kids get the surgery and will have variable results. Even though the first couple of surgeries have been done future surgeries will probably be needed as the child's face continues to grow into and through the teen years. I want to emphasize that your cleft lip child no matter how good they look now should be seen and followed by a cleft lips specialist in your region.

Cleft lips/palate - how they happen and what to do early

Just back from a Great Plastic Surgery conference at the local tertiary referral center (internationally known) where the brightest of the brightest get to take on cases that scare the heebie jeebieis out of the rest of the plastic surgery world. So one of the topics was cleft lip and palate and since 1/400 Asians babies have this as compared to 1/2000 African American there are plenty of Chinese babies out there with it. This will take a couple of posts so lets start with how it happens and what to do early on.


The nose and mouth develop early in pregnancy- as early as 6 weeks. One fold of skin on each side of the nose fuses to create the lip If one side doesn't fuse then there is a hole becomes a one sided cleft lip. If both sides don't then their is a bilateral cleft lip. The part inside the top of the mouth is the hard and soft palate. You can feel this on yourself by putting a finger in and pressing on the top of your mouth which is hard. If you move it backwards you get to the soft palate if you keep going you will gag yourself and puke so don't do it.
The soft and hard palate develop later than the lip and in a more complex manner. Initially the tongue is up where this hard and soft palate is but then it moves down lower leaving a space between the sides. The body then fills in this space by growing inward and fusing the two sides creating the hard palate. If the tongue doesn't get out of the way (like what occurs in children with small jaws) then the sides can't grow in and fuse to create the palate.

One of the jobs of the palate is to create a separate passage for food and air so that we can chew while breathing and one of the first issues for these new babies is to make sure they can breath without choking while they eat. They must have the calories to grow but if eating causes them to choke then they won't eat and will starve.

Preventing suffocation is a big deal so sometimes the rules of newborn care are modified to protect the baby. The first one is the "back to sleep" advice given parents to prevents Sudden infant death syndrome (SIDS). In cleft palate babies with small jaws sleeping on their belly uses gravity to help keep things open which helps in 7 out of 10 newborns. Sometimes the tongue is too big and blocks off the airway - sewing or tacking the tongue to the babies lower lip with a suture helps to keep it out of the way. As the nose and throat grows eventually the tongue isn't a problem and the suture can be removed- usually around 6 months of age.
The next challenge is nutrition. In the normal child the tongue can push up against the hard palate creating a seal that allows the tongue to produce suction that pulls the milk or formula into the mouth. This can't occur in cleft palate babies but in cleft lip babies, since the palate is still there the suction can be produced to allow feeding. The special feeding nipples for cleft palate babies deliver a higher flow that doesn't depend on suction to get the job done. The formula is pressed into the mouth by the person doing the feeding. There are multiple types. Enfamil cleft palate nurser (produced by Mead-Johnson) is squeezed. The Haberman bottle ( by Medela) has a barrel reservoir that is squeezed with three flow rates.
The marker for success with feeeding is how long does it take to feed and most importantly is the baby gaining weight. Common problems and their solutions are 1) nasal regurgitation- I hate this even as an adult particularly while laughing- burp the baby more frequently  2) mild spilling over lower lip- sit them more upright 3) increase air swallowing- alter the flow rate so they aren't gulping as much 4) feeding longer than 30 minutes- make the feeding more frequent 5) too much or little weight gain- get more calorie concentrated formula
The experts recommended that parents not be afraid to mix and match feeding devices and practice practice practice to see what works best for their baby. Good Luck!

Here are some resources  http://www.cleftline.org/
http://www.cleftadvocate.org/

What does echocardiagram mean that I got in the referral?

Some of you adopting a child with a heart condition receive a copy of a heart echocardiagram when you get your referral. These are not always accurate and sometimes it is not clear whether these were done before or after the first surgery that may have been done in China.To understand the results before deciding on whether to accept the referral, you need to have a pediatric cardiologist  review it and interpret it for you.
If any adoptive family does not have access to a pediatric cardiologist to interpret this data,  I now have access to a group of Pediatric Cardiologists who are willing to look these over and give me their opinion anonymously. I will then send the interpretation back to you. Just contact me with a copy of the report. My email is: tcraff@comcast.net

How will they save my babies brain while they do heart surgery?

The brain is what the body is all about and over time there has been a greater and greater appreciation that although the heart could be fixed often the brain suffered sometimes severe damage in the process leading to a poor quality of life for the child. Many new techniques have been developed to try to protect the brain during and after surgery.

Chill it!! Whether the child's heart is stopped during surgery of put on bypass, cooling the brain (literally packing it in ice) as well as the body seems to help the brain survive the surgery better. Quick cooling should be better no? Actually not. One famous heart surgeon in the Boston area was known for both his skill and speed so they would cool the babies down quickly and then warm them up fast. The surgical team was perplexed about why this superior surgeon's babies had more brain damage than his less skilled and slower resident fellows until they discovered the difference was the slow cooling/rewarming necessary for the slower resident surgeons.
Avoid anemia! anemia is low blood counts particularly the red blood cells that carry the dissolved  oxygen to the brain. The bloods job is to carry the oxygen around the body and just the right amount is just that - just right. Too much blood and it thickens and clots blocking blood getting to the brain( a stroke) and too little and the brain is short on the oxygen that it loves. The babies blood count will be carefully monitored to keep it just right.
Prevent air from getting where it shouldn't be!  Blood carries dissolved oxygen but air bubbles - like those in a fish tank are much too big and get stuck in the small blood vessels leading to the brain. The tiny strokes that these can cause can lead to long term problems with learning, speech and intellect. The bubbles can be microscopic and can come from anywhere- the bypass machine, IV tubing, or the heart that is open to the outside air as the surgeon operates. To avoid this some surgeons actually pour carbon dioxide (think of the cloud of smoke at the last KISS concert you went to) over the heart as they work on it. They will also have someone look with a special scope called a echo at the babies heart to make sure the bubbles are gone before they reconnect the heart and get it pumping again.

Watch the brain during surgery! this is done with a variety of special instruments. Transcranial dopplers that can listen to the blood flow to the brain and EEG that can look at the electrical activity of the brain.

Monitoring chemicals in the blood after surgery. close monitoring of the acidity of the blood (pH), oxygen levels and blood pressure can ensure that the brain is getting the best possible environment to recover

Home monitoring: despite all of this about 1/3 of babies die after the first surgery before they get the second surgery. This has been greatly reduced in some centers by having home monitoring program that acts like an early warning system. Parents are supplied with an Oximeter to check the babies oxygen levels every morning and a scale to weigh the baby to look for early heart failure. Anything that is abnormal is called to the heart team immediately otherwise they check in by phone every two weeks.

Congenital heart disease

As more and more of the children coming from China are special needs there is a great number of them that were born with problems of the heart. It is very hard to know how bad the problem is before getting the baby home and what will be needed to fix it. The initial surgery is often done in China but often a series of surgeries are needed to further rearrange the plumbing until the child is grown. Currently the survival of these children is around 80% from birth for all types of these heart problems as a whole.
So what are the problems if my baby has one of these congenital heart problems? 
Like everything there is good and bad news. The bad news is that when these babies have had scans done of their brains before surgery about 20% of them already have some damage that was done by the heart problem even before birth. The good news is that in long term studies of these children after the surgeries, they seem to do fine although their IQ's are slightly lower than other children. The other important factor is that the more well off economically and educationally the babies' families are the better they do probably because their families can access more help for the babies.
How is the heart built and why do these defects cause so much trouble? 
To get an idea of the hearts job think of the face of  a clock. At the top or 12 O'clock position is the right side of the heart which pumps blood, blood without oxygen toward 3 O'clock. At 3 O'clock are the lungs which add dissolved oxygen to the blood and send it along to 6 O'clock where the left side of the heart sits. The left side is the workhorse of the heart and pumps the blood now rich in oxygen to the 9 O'clock position for the rest of the body including the brain, kidneys, stomach, arms, legs. The brain loves oxygen and all the other organs are there to keep the brain well fed with oxygen. No oxygen and the brain dies. That is the basic plumbing of the body.
Now let's get a little more accurate detail. If you take your fingers and pinch the 12 O'clock down to the 6 o'clock  you end up with a figure of 8. This is really what happens because the left and right parts of the heart are directly next to each other but the blood  normally can't get from one side to the other. If you throw in a hole between the two sides or remove the 12 o'clock position altogether you see that the oxygen rich blood gets mixed with the other blood and gets pumped out to the body. Sometimes both sides of the figure 8 don't connect at all so there is only bad blood on one side and good blood on the other with only a tiny hole connecting the two sides. This is why the surgeries are so complex and take multiple steps because the plumbing can get really crazy!
So how do they work on a pumping heart anyway? 
They either stop it and work fast or they bypass the heart and let a machine do the pumping. This is called cardiopulmonary bypass and is done by putting a tube in at 11 O'clock and taking all the blood out before it gets to the right side of the heart and running it through a machine where they add the oxygen that it would normally get from the lungs at 3 O'clock. It is then run back into the body at 7 O'clock thus bypassing the heart altogether. The body and most importantly the brain get the oxygen it needs and the surgeon can work on the heart without it pumping away. 

On being a tourista

I love to travel. One of the great temptations for me during the trips to China was to try to see as much as I could and to eat as much local food as possible. The problem wa,s I wasn't really in China to travel. I was in China to form a family! Each day I would wake up and tell myself  "I am not here as a tourist". That was followed by the most difficult thing a man can do- try to think how to help my wife out with taking care of the baby. The temptation to go to the exotic Beijing market (where you can get everything from fried scorpions on a stick to sheep's penis) was almost too much but i can proudly say I said no and just had a scorpion delivered to my room by friends in our travel group.
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The point is that it takes time to effectively bond to your child and the best way to do that is to not be a tourist but rather be a parent, having lots of down time: time hanging out in the hotel room playing, trying out the squeaky shoes in the hotel lobby or just playing in the park.

This also applies to when you get home. Try as much as possible to keep your life simple and not foo full of activities and events. This wasn't easy for us when we arrived home to two college students, a girlfriend and a boyfriend and Christmas, but down time was important the help our daughter adjust to her new forever world. Daycare unless absolutely neccesary, preschool, dance, gymnastics you name it--is best left for a few months down the road once your child has become comfortable with her new home and family.

P.S. the scorpions just taste like salty potato chips (see picture) but I passed on the penis- probably taste's like chicken anyway.