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.

Adopting an older child

Let's be clear - adopting an older child IS harder than adopting a younger child! I recently asked someone who has led adoption groups for years about what one thing do they see that is making the trips more difficult for parents and their response was they are seeing young parents who are unprepared either mentally or emotionally for the challenges that are involved with adopting the older child. Parents often have unrealistic expectations about what things will be like and aren't flexible when the situation turns out different than expected. And perhaps social workers aren't preparing families adequately either. The face of adoption has changed in the last three years. When we were at the White Swan in Dec. of 2009 getting China 2, we saw more boys, more older kids, and more special needs kids than we did back in 2006.

You are not getting an easier situation despite not having to change diapers and give bottles. They are more mature and thus more mental in their outlook so you will need to deal not only with the emotions but the more mature acting out. In addition they have learned ways to survive in the orphanage that will take time to unlearn. Problems such as: overeating when food is abundant, hoarding food, being physically aggressive, lying, not following rules, etc are all common.  Difficulties in transition and attachment disorders increase as the child is older at adoption. In addition, although the child wants a forever Mommy and Daddy, the reality of living in a different home doesn't always match his or her dreams. All that being said, most children do well and form strong lasting bonds but do not fool yourself that it will be somehow easier.

Should I bring my two year old to China?

I was recently asked this by a young mom in Church. She was agonizing over whether tis nobler to suffer the slings and arrows of bringing a two year old to China, or by opposing, leave her at home in the capable hands of Grandma. One the one hand, leaving the two year old at home allows Mom and Dad to focus exclusively on that critical and difficult bonding with the newly adopted baby, a time that can be challenging. On the other hand, the 2 year old will miss this transition, will miss Mom and Dad and to add insult to injury they come home with a new baby that sucks up all the attention that used to be focused on them.

The background of this discussion stems from recent discussion of this by families on the forums and most -even those who took 2 year olds - agreed that it is better to leave them at home. Rather than take their word for it I asked my China connection who has shepherded 1,000's of family in China through the adoption process for the last 10 years. She suggests that unless the child is a very good traveler and easy going they should be left at home to stay in the same consistent routine with Grandparents until Mom and Dad come home.

A two year old would enjoy a trip to Disneyworld, but in a year would probably not remember anything of meeting Mickey Mouse. A two year old would not remember the cultural experiences of a trip to China. On our trip to China for China 2, we did bring China 1, who was 4.75 years old. Frankly we didn't have anyone to leave her with and a four year old has a level of independence that a two year old does not.

Let's picture this: You are on a bus traveling to the civil affairs office on the other side of the city. Two year old starts to pitch a fit because she wants a toy she left at the hotel. Mom tries but can't console her. Two year old thrashes so much in her fit that she falls to the floor of the bus, because there are no carseats and no seat belts (this is China after all), and bumps her head, and wails even louder. Mom is holding the new adopted baby, who is crying because she wants a bottle, but tries to console Two Year Old. Dad tries to take Baby, but she screams bloody murder if he looks at her and Two Year Old wants nothing to do with him and hits him. Mom tries to mix baby's bottle but it leaks and spills all over her. she gets annoyed with Dad for not being helpful. the screaming gets louder. Dad wishes he had his iPod.

Factors to consider if you bring another young child with you to China:

Does he/she tolerate change?
Does he/she meltdown if on a different schedule? 
Does she need regular naps and bedtimes?
Is he/she a picky eater?

There is just too much to deal with jet lag going both ways, the new child needing  uninterrupted intense bonding time from Mom and Dad, and a toddler who also needs attention. It becomes unfair to the 2 year old who has his/her own exhaustion/emotional issues to consider. Being at home in a consistent routine in a supportive environment will help him better weather the time away from Mom and Dad as well as the transition of the new baby into the home-and all without jet lag. And Mom and Dad can give all their energies to focusing on their new child, a child who will grieve the loss of her familiar environment, who may be anxious, who may act out aggressively, who may have sleep or eating issues. It's a hard enough trip for adults without the added stress of another very young child. So there's my expert opinion.

The funny thing kids will do

Hitting themselves, flapping their hands, rocking and rolling back and forth like they have autism, staring out into space like they aren't there, bobbing, scratching, and biting are some of the thinks that your child did to survive in their mind and body in the orphanage.

Self stimulation is a way that they get to stimulate the developing sensory organs and to sooth themselves since in the orphanage, no one else has the time to. In addition, they may have been deprived of textures, colors or other sensory inputs that we take for granted . China 1 came from a drab orphanage with little amenities shall we say. The babies were in their cribs or in walkers or on those little duck potties. Definitely no toys. To help minimize the sensory overload coming to our home, we minimized the colors in her room (it was painted brown when it was my office, and it stayed brown when it was her nursery) and we packed away the stuffed animals (she was afraid of them). When she first saw a TV she tried to look behind it to see where the funny man in the box was.

It will help your chil'ds adjustment if you put away that X-box, keep a lid on Elmo and tone down the brightly colored baby room and just let them get used to you and the new funny food you are feeding them. Then after a period of time you can start to introduce these new sensory overload items one at a time.

After a couple of months if you child is still doing as much of the self soothing behaviors that they were at first bring it to your doctor's attention.

Treatment of TB

What if my child had a positive PPD and Chest X-ray –your child has TB which will need treatment. Since TB is such a hard bacteria to kill your doctor will recommend six months of treatment with four different medications. Four in the first two months to really start to get ahead of the infection and two the last four months.

Why did they make my child give sputum samples for three days? This is one of the ways to diagnose active TB. If the samples are negative they may either delay treatment until you leave China or start treatment in China before letting you fly. The reason is even if a child has the positive X-ray the abnormalities are usually small, children don’t cough up sputum (and the TB bacteria) as much as adults and when they do there are few bacteria in it. rea

 Why does the doctor want to see my child take the medicine? -The biggest cause for people not completing their treatment successfully is folks/parents forgetting to give the medicine therefore physicians usually recommend directly observed treatment. A trained health professional other than the parents will need to see the child take each and every dose of medicine- a major hassle but TB is bad and can easily spread so killing the bacteria effectively is critical.

My child’s chest x-ray was normal but they still want to treat?  If the PPD was positive, particularly in a child coming from China, your child was exposed to TB and has some hibernating (called latent) TB in the lungs that is just too small for an X-ray to see. Even a CT scan, which can see even smaller abnormalities, will not see it but it is most likely there. Since TB can be so dangerous it should be treated. The treatment is called INH and it is taken for 9 months daily but, unlike the children with a positive X-ray the doctor doesn’t need to see your child take each dose- count your blessing where they come. In studies of children who were treated for latent TB almost 100% didn‘t have TB occur in 20 years. Some doctors will elect to watch a patient without treatment if they were in a low risk environment but China is not low risk- it is near the top of the World Health Organizations top 20 list for TB. If they do treat, they will consider also giving vitamin B6 because INH can deplete this important vitamin; in well-nourished children it is not usually given but with your child coming from a Chinese orphanage, the assumption will be that he or she is not well nourished.

Initial blood work

So how much should you get done and when is always a concern for parents. Here is the list I did for my child and why:

Lead –-if they aren’t sending it here it must be going somewhere and high lead levels are directly correlated with decreased IQ plus it is even treatable

Hepatitis B surface antigen- with rare exception tells you whether the baby is infected or is a carrier (even if they were immunized) and some treatment is available although not terribly effective

Hemoglobin- anemia is very common particularly if the diet was poor plus anemia also affects intelligence and is treatable

HIV- it is on the rise in China and if she is infected I would want to know since even if not curable it is able to be at least controlled

MMR IgG antibody- actually antibody for any of the immunizations would be fine. If these three are present it will prove she was immunized and I will assume she got all the other shots.

RPR for syphilis- can be transmitted in Moms and is on the rise China. Can be very asymptomatic for years.

Stool culture for parasites- the child can have minimal symptoms for years and the little buggers can be stealing valuable nutrition which is why she might be eating like a T-Rex (one of our nicknames for China 2)

There you have it. Your doctor may add others.

The Fifteen Commandments of Attachment

I came across a list of attachment issues that I thought it might be helpful to new adoptive families. But I had to put my own spin on it...so here I give the the 15 commandments of creating attachment

1) Thou shalt not shareth your child with multiple caregivers until attachment to you is very secure lest the baby become confused.

2) Thou shalt hold and carry your child as much as possible.

3) Thou shalt not depend on the stroller for it is an abomination which will preventeth bonding.

4) Thou shalt stay close to your child as much as possible for that is the way unto the blessedness of attachment.

5) Thou shalt keep your life low key for six months even thou though livest in a busy and crazy land full of temptations

6) Thou shalt not let family/friends/acquaintances or little-old-well-meaning ladies holdeth /feedeth or nurtureth thoust child lest they confuseth it---includeth herewith is church nurseries

7) Thou shalt provideth high levels of nurture and structure even if thy usual state is chaos!

8) Thou shalt maintain eye contact during bottle feedings with infants and toddlers for food is the way to a baby's heart

9) Thou shalt holdest thy child in thy arms and sing or use loving words, as thy would an infant for it is soothing and is the only time thy can get away with such silly behavior

10) Thou shalt not “Ferberize or commiteth any other crazy sleep method on thy child because adopted children slumber not nor sleepeth well and needeth contact--not crying to adjust. Thou mightest have to sleepeth neareth thou child for a long time until they are secure enough to sleepeth without thou.

11) Thou shalt accepteth without complaint the end of prime time television, sex and other pleasant recreations whilst thou obeyest number 10.

12) Thou shalt looketh with longing for when number 10 and 11 no longer apply!

13) Thou shalt playest baby games (peek-a-boo and patty cake) to break the ice for anyone crazy enough to adopt is crazy enough to play these games

14) Thou shalt taketh every advantage of time like swimming or bathtime to have skin to skin contact

15) Thou shalt tryeth to be thy child's primary caregiver for as long as possible for thy employment isn’t half as wonderful as thoust baby

What on earth IS the BCG??

This is one of the burning questions you will have when looking over your child's immunization record. The BCG is a vaccination for tuberculosis given to babies to help prevent tuberculosis. Tuberculosis itself is a very common and difficult to treat infection spread by coughing, usually involving the lungs but occasionally spreading out to the brain and other organs-- it is one of the number one killers of all time and is particularly dangerous in young children who are even more likely to have it spread out of the lungs if they are malnourished. China is on the WHO (World Health Organization) top 20 lists of countries where tuberculosis is most common.

The BCG is given to prevent any infection from getting out of the lungs and causing the worst types of TB infections in infants. The immunization itself is a live weakened TB bacteria and the children are immunized as infants. In most cases if the child was immunized, you will see a small round scar on their left or right upper outer arm. It protects 80 out of 100 children from TB spreading out of the lungs but isn’t particularly effective at preventing the lung version of TB. 

Young children have weak immune systems and so the effectiveness of BCG wears off with time which then means the child may get lung TB even though they have had the vaccine. In older children and adults here in the US, physicians perform skin testing to see if someone has been exposed to TB. This is done by injecting a small amount of tuberculin (PPD) under the skin and measuring the size of the bump, not the red area at the site in 48-72 hours. All of you adoptive parents had this done for your initial medicals for your dossiers.

If the test is positive we usually follow this with a chest X-ray to see if there is any evidence of TB in the lungs hibernating (called latent infection). In addition, all children at least two years old in China are tested for TB with this skin test before the US consulate can issue a visa. This requires an additional 2-3 days in Guangzhou waiting for the PPD to be read. If the PPD is positive, a chest xray will be required, and this is a US government requirement. It's a good requirement. It protects you, the parents, and your children and everyone one else on the plane breathing the same recycled air for 14 hours.

What confuses things further is that the BCG, because it is tuberculosis, can cause the skin testing for TB  to be positive even if the child doesn’t have real TB! If a child is coming from an area like China where TB is so common and tests positive with the skin test they are assumed to have been exposed and possibly have lung TB and will be required to get the X-ray. The assumption is that the BCG has worn off,  the child was exposed to TB, and has possible become infected.
What if my child had the BCG, had a PPD test and it is negative? Does she have TB? Not likely. The immunity from the BCG has worn off and your child has not been exposed to TB. Exceptions would be if they are very malnourished or the test was interpreted wrong.

What if the PPD is positive? Should she have a PPD in the future? No. Once it is positive, it is considered positive forever and retesting can cause a severe reaction at the test site.

Stay tuned for further discussions of treatment.

Vaccinations: or, is it too good to be true??

On a trip to South America several years ago I was in a remote village with missionaries and we passed a nice looking van pulled up by the side of the road. I asked “what is that doing out since we  are in the middle of nowhere???” I was told “Oh, that is the vaccination van”- the county health dept gets a lot of vaccinations they need to use up by the end of the month so they send out the van to the villages to give the shots. There were no records of vaccinations being given or taken--the kids just lined up and got whatever shot was being given at the time- never mind that they may have gotten the same shot one month ago or whenever the last time the van was in town.

Although this is not China, this was a vivid illustration for me about the difficulties of knowing whether those shots your child got were really given and were they correct.

There is some sleuthing that can be done by  to get a sense of whether the vaccination record is correct--sort of like determining what the dog did in the nighttime or achieving six impossible things before breakfast. "Watson, the game's afoot!" Here we go:

Several practical questions that come up about vaccinations:

First did the child actually get any of the vaccines that the records said he did?

In 2002 some studies were done on a group of international vaccination records by Schultz (in the Journal Pediatrics 2002) which found that the records were valid in 93% of kids. That being said there are some tip offs that the records may be incorrect. 

First remember in the rest of the world (other than the USA) months and dates are written reversed so 12/1 (Dec 1^st) here is written 1/12 there.

Does the child record show they were immunized before they were born? Yes, believe it or not,  it has been seen.

Are the immunizations in the proper intervals for the series? For example every two months apart rather than one?

Are all the records in the same handwriting and too neat? It is true that some orphanages may have a clinic where the same nurse does all the immunizations but most don't. (on the other hand, can you tell when they are written in Chinese??)

           

If my child got the shots, was she healthy enough to respond to them and get the protection they need? The immune system doesn’t develop good memory if it is malnourished and let's face it, most of these babies are malnourished. If your baby is in the bottom 10% of weight (malnourished kids lose weight first then height and finally head size) then this is a real possibility (but make sure you are looking at the Chinese growth chart, not the US).



How soon do I need to get this evaluation for shots done? Since most kids here in the States have had shots, the chance of your child picking up one of these diseases from another child is low in the short term so a visit within a month of coming home is reasonable unless your child is  around a lot of other children like daycare (the cesspool of pediatrics but oh so good for business) or the church nursery (ditto!)



When we got with  China 1, she was from a small orphanage with bare walls, and bungee elastics holding her diaper on, and even more suspect records; so when we got home and went over the records with our family doctor, he suggested blood tests to confirm whether she had immunity, rather than re-vaccinating  her for the entire lot. I was the lucky parent to pin her down for the blood draw and I wished I had ear plugs. Despite our concerns, her immunizations were confirmed by the blood work and she didn't need any additional shots other than the ones indicated by her current age.



When we got China 2 last month, she was from Beijing Children's Welfare Institute, a large well-funded orphanage with toys, therapy rooms and play rooms that would rival any at a daycare here Stateside, so we were more believing of the records. Even with ,she was due for 5 shots to catch her up to the recommended immunizations for a child of her age, and rather than hitting her immune system with that much excitement (and hitting her and us with that much grumpiness!) we had her get two shots, and will give her a second round after she has forgotten the first. I will admit I am going to draw some bloodwork to verify she got some of the shots they said she did- particularly for diseases that have a high chance of being deadly such as measles, rubella, and HIB. I also recommend having your doctor check for anemia and lead and parasites.

A recent review of this topic provides some help with: the article is Vaccines for Travel and International Adoption by Paul J Lee in The Pediatric Infectious Disease Journal vol 27 (4): April 2008. It yawns to make me even think about reading infectious disease but this was well written, clear, concise and may be worth letting your doctor know about. Out of courtesy to your doctor do not expect the office to be able to decide which and how many immunization your child needs at the time of the visit. Give your physician a copy of the record in advance to look over before you get there or let him get back to you with what needs to be done as these are too complex to figure out in a short visit. 


How to hold a child down for shots or blood work: never a pleasant experience. Our social worker suggests that at this point parents should play a variation of Good Cop Bad Cop: the parent the child has bonded to the best should not be the parent to pin her down for the blood draw or shots. There is an anesthetic cream EMLA available which can be applied an hour before blood is drawn which will help with pain but often just the sight of a needle is enough to send the child over the edge. Explaining what is going to be done may help in older kids but not always. Don't tell a child it won't hurt she is  not stupid! I have seen adults cry like babies about getting blood drawn and 4 year olds hold still for shots (particularly the Amish). As one who has sewn up a lot of lacerations on kids, I have seen a couple of techniques over the years that work well. For shots, the nurses will have their own favorite technique. The key to all of these is to hold tightly-- that is tighter than you are comfortable with. I have learned the trick of applying tremendous pressure with what looks like a gentle hand on the head or arm.

The first is the Bear hug - if the child is older whomever is strongest takes the child in his arms chest to chest with the both arms pinned under the arms--a free arm is going to move to wherever it hurts and usually hit someone. The other technique is to lie the child down on a firm table and literally lie over top of his abdomen with the arms pinned (but beware this won't work unless you really put some weight on him that will prevent movement). The third method, often used for blood work, is the Papoose which is a Velcro board which the child lies down on and is strappen in by velcro into it. It is currently less in favor because it appears to be "mean:" but a flailing child isn't kind either particularly if it results in multiple attempts to draw blood. My favorite for the older kid is the "Superman Cape" with the child standing -you put a pillow case (or wrap a bedsheet around him) on his back with his arms (one arm in the case of blood work) in the pillow case. Once you have him down on the bed, have someone hold the free arm tightly. I always recommend taking the child out for ice cream or some treat afterward a painful experience such as shots or bloodwork.

So here is the summary by vaccine (lab test needed in parenthesis) the whole issue of how many shots we’re giving kids and whether it is good for them is another topic too hot for me to handle. The following is a bit deep and confusing if you aren't  medically trained but your doctor or nurse would understand it if you want to copy, paste and print this list.

Diphtheria/tetanus – if the baby is at least 6 months old check blood work because over-immunization can cause local reactions (diphtheria antitoxoid Ab, Tetanus antitoxoid Ab)

Pertussis- do not check levels because blood levels are often inaccurate. If the tetanus and diphtheria levels were normal you can assume they have immunity to this

Polio- check (Polio  neutralizing AB ( types 1,2,3) if more than 6 months old

Measles/Mumps,Rubella- if the child has records of having had it check titers and reimmunize if not immune to all  (Measles IgG Ab, Mumps IgG AB, rubella IgG AG)

Varicella (Chickenpox) check titers if 12-15 months (Varicella-zoster IgG Ab)

Hepatitis A- check titers if >6 months (Hepatitis A total Ab)

Hepatitis B- Always check to access Hep B chronic infection, carrier state and immunity (Hepatitis BsAg, HB Core Ab, HBsAb) – Hepatitis B is endemic and widely spread in China all children should be checked

Meningococcal- age appropriate vaccination (no titers available)- your baby may have “epidemic cerebrospinal meningitis" on her records – this is for group A and C and is either a tetravalent or bivalent vaccine.

The next two are suggested as no testing just immunize since they are not usually given at young ages but with more and more kids being older many of them did have them listed in their Chinese shot records so I would consider testing if they were listed as having received them

H. Influenza- no testing recommended just immunize if age appropriate or accept records-(H. Influenza type B IgG) – although our baby had this listed as a vaccine so I think they are now giving it.

Pneumococcal- testing not recommended just immunize if age appropriate

Others: if there is a vaccine missing the doctor should use the catch up schedule.

JEV- Japanese encephalitis vaccine may also be given but isn’t usually needed here in the US.

BCG will be covered in a future post- too complex and confusing for this one.

Always note any adverse reactions and report them to your doctor. So there you have it the final word on the alphabet soup of immunizations. Ouch!!!

Code Brown!

We got a puppy last spring and we've gotten rather obsessed with poo. The question is, not will the dog poo in the house, but how many times a day?? We thought we had made progress in the poo department before we went to China but now he is not happy being a middle child and has regressed in the training department. But I digress...the point of this post is constipation.

If you are traveling soon to get your child, make sure you pack some applesauce and  prunes. You can get them at any grocery store in little single-serve plastic containers in the baby food aisle. You can't get them in China. Even in Beijing. We looked and couldn't find any pureed fruit--lots of baby veggies, meat and even pureed fish (yuck!) but no applesauce or prunes. If your baby is constipated, you will be glad you packed it.

When you get your child, he or she may not poop for several days due to several factors: the shock of being put into a new setting with Martians, changes in diet or just being upset. The daily bowel movement in not essential in young children or adults. Anywhere from 1-4 days is considered normal if they are not having any of the  problems I list below - that being said I see a lot of patients who seem obsessed with having a daily BM. I have been told this is a German heritage think- I live in Amish country but I suspect it extends to other groups as well

Reasons to consider constipation are: is the baby is grunting and having a hard time passing whatever stool they have, or is her belly is getting distended or tender? Then he/she are constipated. But the other considerations for a distended belly is being protein starved or having parasites. Babies that are protein starved (Kwashiorkor or Marasmus is the formal term- think of all those pictures of little African babies with big bellies) will usually have fat on them but not a lot of muscles size particularly on the legs and arms. They will definitely be small in growth and may have some skin rashes and be a bit listless.

          It the child is having problems with pooping first make sure they are well hydrated- water, formula, whatever will work. This can be a problem if your child is like both of my adopted children, who wouldn't drink anything for several days. The next step is to get out that applesauce or prunes you packed--you can feed it straight up or mix with rice cereal or congee.  If that doesn’t work, it's time for the big gun: a suppository!

I was in charge of ordering and packing the meds for our trip and neglected bringing glycerine suppositories but am eternally grateful to some traveling companions who provided us with  not one but two! If you aren't familiar with them, they look like clear plastic bullets.  For those of you uninitiated in the technique the suppository is placed by separating the cheeks- pushing it in (they naturally won’t like it) and holding the cheeks tightly together for about 5 minutes- in the process you will learn how strong your child is as they try to get away.  The response is usually within a half hour and I would call it brisk and impressive.  If your child is young you can cut the suppository in quarters--with our daughter we saw results in under ten minutes!

        

answer to heart question

To Anonymous who posted the question about heart function, I posted a reply below your comment. There are some resources posted there as well in regards to children with heart conditions.

No Exit...or, the medical exam

One of the keys to being able to provide emotional support for you child while bonding is being rested and controlled yourself-- the medical exam given in Guangzhou will test that to the limits! On our first adoption trip, my wife missed out on the experience of taking our daughter to the medical exam. I was happy to pass that duty off to her on this trip since one of us had to watch our older daughter and our guide recommended as few people as possible go to the clinic (ha, dodged that bullet!).  Expect to sit in a hot room with up to 70 crying babies and their impatient exhausted American parents for 3-5 hours! It will seem like nothing is happening, and you will never get closer to getting through the line but you will get out before dark!

While at the clinic, you have to first stop at three stations: your child must be weighed and measured at station 1; you see the ENT at station 2; and the doctor for the medical check at stop 3. Now, if your child is Special Needs, the doctor will ask for the medical report. We did not know this and hadn't brought it. So before you leave for China, print off your child's referral including any medical information and pack it with the rest of your important paperwork. Fortunately our guide smoothed things over with the doctor for my wife and baby, and our baby didn't have a very complicated special need (the short arm and missing thumb are, after all, pretty obvious).


After the three stations, things get really fun for those of you who are Hague families, under the I-800 immigration. Your kids need to get shots. It could be a lot of shots. And children over age two need a TB skin test, and you'll need to return to the clinic in a couple of days to have the test read. 

You should be getting the idea here that this clinic visit is long, unpleasant and painful.

While at the exam, a friend of mine saw an excellent example of a parent who was not prepared and then wasn’t able to care for her child when needed. After a several hour wait, sweating in the hot un-air conditioned waiting room with a toddler who became grumpier once lunchtime came and passed, the mom who was also feeling frazzled and irritated.  After the exam the child needed 7 (yes 7- it wasn’t a typo) shots and was crying in exhaustion and pain. The mother, herself exhausted, told the child she was just too hot to hold him and that he would need to walk back to the hotel because she was too hot! Not a good bonding moment.


In thinking about this unfortunate situation several simple things came to mind.

1) Bring food, water, a bottle for a baby, and toys for the child. Bring water and snacks for yourself. Bring a stroller.

2) Have a time when your spouse will come to the clinic to help out if you haven’t returned to the hotel.

3) Give the baby Tylenol or children’s Advil before you go to the appointment and take some with you in case it wears off before the shots.

4) Know what to expect -and if you aren’t a patient parent or don’t handle stress well let your partner take them.

5) If you both don’t handle things well, take turns waiting. This principle is one every couple with kids learns early on. With the first child, both parents try to stay up in the middle of the night to support each other and comfort the sick child. By the time child number two comes along that commitment to emotional support vs survival has changed to the much more practical one of taking shifts tending to baby, with a much more rested couple ready to deal with the day shift which comes hard on the heals of the night shift! My wife denies we ever did this - something about me being away at the Hospital whenever one of the kids was sick!

6) Be realistic- this is China not America. The staff doesn't have to work efficiently and in a timely manner like we have learned to expect in America- and this from a Doctor who is always running behind. If I had to see 70 kids in a day I would be exhausted and working slowly. Try to control your uber-entitled American attitude when you're tired and waiting for the day to be over. It's part of the process and the only way you are going to bring your child into the US. As my wife's Grammie used to say, "Be a brave soldier."

She hates me!

She just cried whenever I looked at her for the first 5 days. What a kick in the groin after working so hard and waiting so long to get her. This is how I felt--and it doesn’t always happen to be the man--a female friend of ours had the baby latch to the Dad for a full two weeks before she would warm up to Mom. With my daughter, I figured she was used to women in the orphanage and my beard probably made her think I was a dog or something--I thought about shaving, but the passport would look different and then I might be stuck in China forever.

My advice on this is to be patient-as the song says “time is on your side.” They just have too much going on in their little brains to bond to two people at the same time.

As an illustration: A couple I ran into in the elevator at the White Swan last month mentioned that they were having "severe attachment problems"- meanwhile the child was clinging to Mom. The fact that the baby was clinging showed that the baby was actually attaching quite well- looking for comfort from at least one parent. If they weren’t out the door I would have suggested using the international language of childhood- Play! What I mean is when the baby is rested and fed (get everything going your way after all) get down on the floor and start to play with an interesting toy, not with the child but rather near them. She will ignore you at first but then if she gets interested in the toy roll it over her way and let her play with it and get another she might like. Always let the child come to you- this allows her to gauge her own comfort level with you. If it doesn’t work after a half hour try again in a couple of hours- it will work eventually and soon the “ severe attachment problem" will just be a bad memory
.

To bathe or not to bathe?

To bathe or not to bathe- that is the question. Tis it better to look the babe over or suffer the misfortune of a missed medical problem?

We’ve gone both ways on this one. On our first gotcha day, we took our daughter upstairs to our room where I insisted (being a cautious doctor) we undress her immediately and plop her in the tub to wash off anything that might be clinging or living on her from the orphanage. She screamed and clung to a rubber ducky for dear life; then my wife dressed her in the adorable pink outfit she brought from home for this momentous day. This was definitely not what our China guide recommended and was quite traumatic for the poor little thing. So we did the opposite a month ago with our newly adopted 17 month old. We took her upstairs and gently peaked under whatever clothes we could lift up. We let her stay in her orphanage clothes for a few hours while we played. Bathing was with a sponge like in the orphanage with a viewing session of her sister taking a tub for ten days before we put her in the tub with 1 inch of water. She is now officially a fish! Warning they are often scared of running water so fill the tub while they are in the other room.

 What I think this illustrates is what I call “Oh my God I’ve been taken by Martians” experience of “Gotcha” day. If you think about it these little kids have been uprooted from everything they are familiar with and given to people who look, smell, sound, act and even eat funny. They are rightfully terrified, and although the older child may be able to intellectually understand it the emotions of loss, fear and anxiety still remain.

The best way to weather this transition for them and you is let them keep as much of the things that provide them comfort as possible. This will require a great amount of flexibility on your part. The transition will go much easier if you don’t get rigid except on absolute safety issue. They don’t need to be little American kids right away--it will come.

Another example: lets face it by the end of two weeks most of us are dying for American food – or the Chinese version of the same. Some adoptive parents may feel quite stressed and challenged by the dining options in China and might prefer KFC, MickeyD's and Pizza Hut over searching for Chinese restaurants with picture menus with English. But realize, your child has never eaten a fry or a chicken nugget and may be very uncomfortable with both the taste and texture of those foods. This only increase the stress on both the child and the parents creating more conflict and emotional turmoil in the midst of perhaps the most major transition in both the parents and childs life. Let them eat Dumplings! My newest daughter would only eat dumplings for 5 days- she started to smell like a dumpling but it was much easier letting her eat them than fighting over something that in the long run will not make a difference. Save your energy for battles that really count: like when they are teenagers!