On Cleft Lip and Palatte

Honestly, I've been dreading this post. It has been building for a few days. I need to talk about cleft lip and palette in honest terms for those considering adopting a child with this "need". Also check out the Yahoo group for cl/cp, medical websites and seek out other parents/adults dealing with the issue.

Everyone says it is "fixable", its just a surgery. These statements are correct ,but incomplete. it is fixable with work, time and multiple surgeries. I'm not a physician or a speech therapist, so I'm going to talk in simple terms with the incomplete knowledge I have at this time. I encourage parents with greater experience to add comments to this post!! And if I present any errors, I will edit over time.

Here it goes. The palate in simple terms is the roof of the mouth. In kids with cleft palate, the palate has not formed completely, meaning that the roof of the mouth opens freely with the nose cavity; defacto the roof of the mouth is the top of the nose cavity. This creates the ability to shoot food out your nose. Which seems highly functional and fixable. However, in closing the palate, it also creates the ability to stop air movement as well as food movement. This stopping of air is necessary to create sounds like "b", "p" and "ch" among other sounds. If the palette is connected but a lot of scar tissue is formed, the palette may become stiff making it difficult to make some sounds. Unfortunately, we won't know how strong and how flexible the palette is until our son starts speaking and we can evaluate the sound.

The muscles and palate involved in creating sound developer according to a variety of stimuli, including sucking, eating and talking. But guess what, kids from orphanages often have been bottle propped, which means they may not know how to suck. Furthermore the older kids are likely ate traditional Chinese baby/toddler food, congee, which is very soft, so soft they haven't learned to chew. Children in an orphanage are unlikely to have great one-on-one interaction to create the ability to mimic speech. Finally, English is very different than Chinese in which parts of the mouth are used in speaking. In totally, the muscles involved in speech and the palate are unlikely to have been exercised in the manner necessary for English.

Now lets talk about what happens today when a child in the US is born with cleft lip and palate (cl/cp). First a plastic device s fitted in the gum gap to close it. Then surgery occurs to close the lip, gum and palette, all well before the age of one. Well before the time the child starts talking, the muscles and palette are complete. There may need to be revisions for cosmetic or scar tissue type reasons. When the baby teeth a vigilant what on the teeth pattern/placement begins. Is the bum line holding? If not more surgery when the adult teeth start to show on the x-rays. A bone graph from the hip may be necessary. Orthodontist work is likely necessary, braces will be tough to avoid. bone graphs are usually done around ages 6-9. A bit of hip bone is put into the gum line so the permanent teeth have a place to anchor. Finally, after all the facial bones are done growing (think 16-18 years old) the final revisions are possible. From the extreme end this may include breaking the jaw to correct an overbite, or on the more mild end just a bit more cosmetic work.

Now lets note what's happening in China. The lip is corrected, sometimes the main palette is corrected, but almost never is the gum line corrected. The lip around a year, the palette anytime between 14 months and 5 years. The desire in China to do big surgeries on little babies is lower. Due to the lack of gum line correction, there may be a slight hole at the gum line. The gum is unlikely to be repaired until closer to 4 year old, when the complement of teeth are in. Due to the lack of early intervention on the gum line the surgery at age 6-9 to bring in bone is an almost certainty. The correction for overbite in the teen years is still hit or miss depending on the specific child's development.

So, yes, everything is fixable and correctable. But the reality is this is a 4+ surgical process that won't be complete until the kids are 18 or so years old. As a prospective parent, this means you must have the means to pay for surgery and/or the long term prospects for good insurance. It means early intervention (from the beginning) on speech therapy, that may continue for many years.

I don't want to scare prospective parents off, but cl/cp is not a birthmark that once removed, the process is completed.

I have a very dear friend, who is the age of my parents. When I told him I was adopting, he was over the moon. I went on to explain the child was a boy, with cl/cp, my friend went silent. Over the last 11 years of our relationship he had never mentioned that his currently 25 year old son was born with sever cl/cp. My friend simply said, "do you know what you are getting into?" I explained what I knew. He agreed, its all correctable. Then set up dinner for me with his son. His son is a typical 25 year old. The scar really is not noticable. Frankly, he thought it was amusing that I even wanted to chat about his perception of life with cl/cp. He knew no other life and the cl/cp stopped him from nothing except for sports for six weeks each time he had to have a surgery. This young man had severe case with the overbit revision at 16. Even at 25 he still has a slight hole in the back of his palete, but no real speach impetament. At the end of dinner, I knew it was fixable, but its not simple, it takes time and energy, over many years.

Frankly, I believe we all have issues that take many years to resolve. I prefer knowing what one of the big issues is form the start, i.e., cl/cp. But, this will not be the only issue. Like all parents, we'll have to figure out how to deal with peer pressure, teen hormones, drugs, sex and educations, let alone potty mouths and potty training. It seems to me like cl/cp is more straight forward than any of the others. This is why when the referal came in I said "yes, this is a challenge we can address".

7/4/08 - Musings of a mommie on a holiday weekend

Why do I have to say all the “no-nos” explicitly. For example:

• no pooping in the shower, it is the same rule as the bath tub,
• no hitting also means no smacking or kicking mommie
• no peeing out the window, yes I know there is a tree out there
• how can ds1 and daddy find any humor on Sponge Bob?
• And yes, Sponge Bob is wearing underwear so you must too.
• how did he learn to press the elevator close door button?
• Yes, you can teach ds2 to climb a ladder, but can we also teach him to hug?
• why is your breath horrid when you crawl in beside me at 5 am?
• Why are your feet cold as ice when you refuse air-conditioning on an 80 degree night and are too hot to sleep in your room?
• Why do you tattle on your daddy? I don't need to know he gave you juice after I said water.
• How is this queen size bed going to fit all four of us?

Yes, I realized I veered off the "no-nos", but was on a roll. I guess the real thought on my mind today is the "stop" and "no-no's” that ds1 understands but that ds2 will not. Adopting a toddler means adopting a mobile human being that is ready to start testing the limits of their own physicality. He has only has heard Chinese (I assume), so I can't expect an immediate response to words from me. How long until he scares me to death by running to the street, to a dog or to a stranger? How much holding is necessary, without being stifling to his need to explore? How much will he fight against holding my hand while crossing the street? Will strangers think I'm kidnapping someone else’s child? Wow, we are both in for a ride.

Yesterday ds1 and I had a mommie & son day. We went to work, where he joined a pack of roving kids in the office. I feared for the moment they turned against the adults in the office, but we feed them enough cookies it never happened. Then we went to Chinatown for lunch. I want to expose him to more authentic food than what we get in the upper west side (NYC). He loved the BBQ, what type of meat I'm honestly not sure, either pig or duck. He did not like the congee, but I wanted to have it to see what ds2 is eating. I've been amazed that ds1 is still color/race blind. I guess this is the advantage of growing up in NYC, he's seen everything. His daytime sitter is kind of dark skinned South American. Her best fellow nanny-friends are dark skinned, from the various Caribbean Islands. Last weekend we were in Central Park at a water fountain and ds1 was jumping over the spray, but occasionally other kids would come up to fill their squirt guns or water balloons. One very dark skinned child came up and was filling his bottle, he was around 8 or 9 years old. Just as I was thinking "he has the most beautiful skin I have ever seen", ds1 reached out and stroked his shoulder. The kid looked at ds1 but recognized he was a baby and said nothing. It was the first time I think ds1 noticed skin color. But our trip to Chinatown, in a restaurant where we were the only Caucasians (which I use loosely as I am Puerto Rican) and every one was speaking Chinese, failed to raise any questions from him about differences. This is amazing as ds1 is an endless source of questions. I choose not to bring it up myself, as I like that he hasn’t noticed yet. I’m sure not going to point it out.

However, I wonder if ds2 will be aware we are different race up front? I assume he hasn't had as diverse of as early viewing, but I don’t know.

From the restaurant we went for ice cream. Of course, he loved it. Then to Toys-R-Us at Times Square to ride the Ferris wheel. First, I'm seriously not comfortable with great heights. But the highlight, for me, at lunch he told me I'm his best friend!! Who needs love when you can be the best friend!! However, I realize the best friend status changed within 5 minutes
I forgot, while we were in Chinatown, we stopped by the big Buddha. We sat in the main sanctuary and watched older Chinese women come in light incense and say prayers. He had a ton of questions; are they real candles? Do we need to call the fireman? Why are they leaving oranges (honestly, this one I did not know the answer to)? But we had a nice time. I was raised American Baptist, in Mormon country, but while abroad attended the Church of England and now my parents are Methodist. I no longer believe in organized religion. However I believe we are all one, and collectively we are a higher power. So when he asked if we should pray, I just said we should dance. Frankly none of the old ladies minded and it was a good compromise vs. giving a lengthy explanation to a three and a half year old, who really wasn't asking that deep of a question, that I wasn’t sure who we’d be praying to other than the cosmos. But I don’t mind sending prayers to the cosmos, a current big one is that our family of four jives.

Our Adoption; Up to now.

We are at the exciting stage of the process. We have been “approved” to be parents by the US government – a good thing for our bio child. We have been accepted by our social worker. We have been accepted by Chinese Authorities. We have a document that says his name, our name and the Chinese Authority stamp. We have been invited to travel to China. We are waiting for our consulate appointment date. Once we have the consulate date we will start booking flights and hotels.

There were many surprises along the way. First, who knew this would be a journey of years, not months. And it is still a journey years shorter than those seeking non-sn children. Our first agency meeting was 10/06. From the log in date (LOI) with China, to actually accepting a referral, was six months longer than expected; our hope was for 2/07, but didn’t happen until 12/07. Waiting for the letter of Acceptance (LOA) from China was brutal! From 12/07 to 5/29/08.

During this period, the wait for the LOA, on many occasions, I thought my world was collapsing. Each day I was hopeful that maybe this week we’d hear something. Each Friday I would come to the realization that nothing had happened. At first it wasn’t bad, I justified it by thinking that it was still early in the process. By the end I wanted to drop our agency (I wasn’t rational and needed someone to blame). I read another mom’s description of this waiting tension, and it was spot on. It’s like you are an elastic band and each day you stretch a bit. Toward the end I didn’t think I could stretch anymore. I was tight (but never thin!). Yet I stretched a bit more every day for five full months. Then the email came from the agency, they received our LOA. All the stretch was gone, I was just slack, laying on the floor. From here, I could start to plan.

Surprise - It’s a boy. When the referral came and it was a boy, it was a surprise. Really who ever heard of adopting a boy baby from China? Due to the one child policy, boys are typically the more cherished offspring. Socially, it is the sons that become the social welfare for the elderly. When a woman is married, she joins her husband family and is responsible for the care of his family, not her own. Accordingly, if families are only allowed one child, a boy is economically preferred. This was a rather simple explanation, but it covers the salient points. So if you are adopting through the regular China program, I would estimate it is 99.9% baby girls. However, when you move into the sn program, the ratio changes toward 50/50 boys/girls. The boys in the sn program often have a physical need that either the parents were unable to care for, unable to afford the treatment for, and/or had a physical deformity considered bad luck. Luck in China is taken very seriously. It is not one where a person has a bit of bad luck, i.e., born without a finger, and others ignore it. It is considered such bad luck the mother may be abandoned by the father. If on the streets, no one help her and the child. It is different. Well, when we got the call, I had already been buying baby girl clothes on sale. I have already given those away. But a Boy! Somehow, when I was told our referral was a boy, it just felt totally appropriate; an unexpected surprise that totally fits our family.

Surprise - our new guy has friends. If you are a waiting adoptive parent, there are a few yahoo groups I would recommend for gathering information, support and general knowledge. First there is a group for adopting toddlers; not China specific, but good active group. Second, search for a yahoo group on what ever your child's sn may be. There is a truly amazing group for cleft lip/palette. It is very active, no question too big or too small. The group has a lot of people with older kids who have btdt and can add perspective as well as those parents in the early throws of activity that provide up-to-date info. This is also not China specific, which I actually think helps the group. Finally, you can search for a yahoo group by the name of the orphanage (or Social Welfare Institute, SWI) with which you have matched.

One day my agency sent me two updated photos of our new son. In one of these photos he was standing with a friend. A couple days later I was checking out the group for my orphanage and a mom had posted that they were leaving in 10 days, to check out her blog. I went to the blog, where she has posted her referral photo and immediately recognize the child as my guys' friend. Amazing!! Within days she connected me to another mom that had sent a video camera for the nannies to take video of her daughter. She had video with our son in it. In the video our son has rice taken away from him and he cries, is picked up and put in the corner, and whines. It is heartbreaking. But, I know he likes rice and will complain if treated unfairly. I got to see the nannies interact with him, they keep videoing the other child but call out to him trying to engage him. I get to see the orphanage is really quite clean and bright. There is a lack of toys and bedding. But its not a nightmare scenario at all. Both of these mom's have gone and picked up their children in recent months, and their blogs really taught me a lot. But those pictures are priceless. One lives just a coupled states away and I totally look forward to keeping our children in touch! The other is on the other side of the country, so it will be a harder process.

This week we got one more surprise, three other families are traveling with us. All the families from the same agency, but we are visiting two different regions in China, and coming together in GZ for the final processing. One family is bringing their older child (4, also from China) and I think this will be good for my 3 ½ year old. I think we are all picking up sn kids. Very cool to have a group.

I am still slightly worried. Just stupid mommie stuff. Worried that with the Olympics, what if they decide to make us wait till august? What if Tibet stuff blows up (ok, my pet peeve, why is no one is fighting about the one child policy?)?

On the smaller worry scale - What if ds or dh hate the trip? What if we can’t stand the people we travel with? Honestly, I feel up for dealing with any of these.

Some worries are irrational – What if dh gets hit by a bus, can I still go get the new one without him? What if we get there and someone else already got our kid? Like I said these are the irrational worries.

Some worries are more real, less concrete and I try not to think about them. I worry about whether I can be a good mom to two? Can I both work and mother effectively? How will I instill the necessary love and confidence in my children that they go forth and conquer? Can my marriage share more space with another child? Can we keep our every other Saturday date night? What if new son doesn’t like us?

I don’t know the answers, but I’m willing to try. And, I know I can love. I hope that is a happy enough conclusion for which to end today’s post.

Why China? Why Special Needs.

We knew it would be international adoption, because we both remember the little guy in Cambodia. But Cambodia didn’t have the laws in place for adoption. We chose another country we had previously visited, China. When we went to the information meeting at the agency, there were two families there to talk about their experiences. One family had a gorgeous little girl from China which was a special needs adoption, or in adoption world language, “a waiting child”. We heard her story and knew we’d be doing special needs (sn).

It is important to note that sn is not the American definition, but a wider range of issues; from the most mild (birthmark on the face or any child over the age of two) to severe (expected severe cognitive disorders). Generally the country putting the child up for adoption wants to preserve its reputation, so it tells you as best as it can about the sn. I believe they do not sugar coat the situation.

The adoption agency gave us a long list of items that qualified for sn. The list ranged from mild to severe. We had to review it and tell them what we felt comfortable with and those issues that we didn’t think we were prepared to handle. The gut wrenching part was going through the list and having to say no. For example, we thought we could handle a deaf child, but blind would be too much. In thinking about missing fingers, i.e., is 7 enough?, I came to the conclusion that I would take a child missing a limb. But there were many needs that didn’t fit into our family. But yet there was a good number of sn on the list that we thought we could handle.

The other attraction to sn, was that we would be leaving a non-sn for those who weren’t ready to deal with sn. There are those involved in adoption as a last resort. There are those involved by choice. And there are a range of needs that span the distance between last resort and personal choice. But the big demand is for the youngest, healthiest babies available. Frankly, dh and I didn’t need to get into that fray. We have a gorgeous bio son. So to the baby front, btdt. Our son had a small cyst appear after he was born that required surgery and scared the hell out of us. I couldn’t imagine dealing with that if I was in a third world country with limited funds. I know I can love any and every kid on the planet. We wanted to expand our family. I also want to give a child a home. The China sn program fit for us. So did we choose China and sn, or did it just choose us? I think it chose us.

Why adopt?

This is a wild question. It offends some and opens the flood gates with others. It is a personal question, so I guess some find it offensive when the person asking is not a personal acquaintance. I can only share my reasons, but there are thousands of reasons and I do not represent everyone. Truly, I only represent myself, which may be a changing opinion depending on my sleep deprivation pattern. And generally I’m not offended by the question, but I don’t think I’ll want to have to discuss it in front of my child on a daily basis. That would only serve to reinforce to him that he’s a bit different.

My dear husband (in blog speak, “dh”) and I have always loved international travel. Before we had our first son, we did a fair amount of third world travel. When you get off the boat, bus, car, plane, or camel, we were often greeted by the local children. Some times it’s the romantic idea of curiosity, but more often it was economic pressures. These kids are there to appeal to our hearts and get us to buy stuff (read open our wallets). I avoid the attachment - I’m good at smiling and keep walking. My dh is a pathetic bleeding heart who looses every penny in his pocket. So one day in Cambodia, a little boy accosted us as we left our bus at a public market and tried to show us where to go. I’m ignoring him, but my dh is a bit too friendly and the kid immediately zones in on his target. Soon the little guy is taking my husband to all points of interest (video/DVD stands and pointing out things dh picked up at the other stalls). The child also realizes I’m taking photos, so to win me over, he takes us deep into the market where the fruits/vegetables and live protein are sold, knowing this is photographic material.

At the end of the market tour, we are supposed to pay him for his services, generally something around the equivalent of a quarter. However, I don’t do well giving away money. So we buy him a soccer ball with a bag. He is over the moon! His smile takes up his whole face! Even the other vendors tease him that it’s a big reward, greater than the normal quarter. Then he takes us to our bus. At the bus I take a photo of him with dh, who then decides we should grab the child and run. The child should be with us. From this moment on I knew we would eventually adopt.
Prior to that day, I was open to adoption. It just wasn’t something we really had discussed. After officially starting the process and reaching out to family to let them know the road we had chosen, I was surprised that I had been surrounded by adoption my whole life. I just never really thought about it. I have a first cousin which was a domestic adoption from one Uncle. I had an Aunt who was rather devout in her Christianity and felt that caring for kids in need was her calling. In addition to having four biological children she used to take in disabled kids (the US definition). She adopted one, but I’m sure over the years I must have seen half a dozen or more transition through her house. Her eldest daughter chose to do an international adoption, Korea, for a son who is older than me!! Our young nephews were excited, “she can teach us KungFu!”
When the time came, there was no real discussion between dh and I. Our son was about a year old, I mentioned to dh if he wanted the kids to be close in age, its time to get busy, but that I would like to adopt. He said ok and the next day he found the agency.

Why blog?

This Blog thing has been around for years, but not part of my world until the last few months. My interest is selfish and altruistic. Let me explain.

We are in the process of adopting our second child (our first adoption, but our second child). It has been an interesting process, which you will hear about later, but in the process I’ve been seeking information on adoption and specifically cleft lip/pallet. This search has lead me down many dark alleys, where there is a mix of medical, social and basic information. I’ve read books, and books, basically everything published since 1970. However, every once and awhile I turn a sharp corner and an amazing woman peeks out behind a door (really mostly women, few men on my journey – just goes to show we do share!!). These women have “been there, done that”, which I now understand is typically written as “btdt”. These amazing souls have educated me not only on the process of adoption (i.e., the basic logistics), but most importantly they have shared their full hearts, including; the fear, anxiety, joys, sorrow, surprises, serendipity, crushing reality and most of all love, love, love.

I have friends. I have a wonderful husband. I have a supportive extended family. I can and do share my thoughts with them, likely more information than they typically need. But the blog is for those that want to know more. It is also a very small pay-it-forward to the next adoption Mom that needs to get prepared. My fear is that I will reveal too much information and invade the privacy of my loved ones. So some things I won’t share (general disclaimer as I have no idea what I’m going to be inspired to write about yet), but this includes family names.

As I plan to share my thoughts/emotions, I’m fearful I will offend someone along the way. However, I want anyone who shares the thought to know that they are not alone. Hopefully no one finds my companionship in the thought as validation, well maybe sometimes, but also gives us both more room to know there is room to consider continue thinking on any given topic.
My hope is that occasionally someone will send offer a comment and let me know on what topic they would like a few thoughts.

Finally, I write for a living. Although I’m published weekly in the financial world, my writing is not the most riveting read. Nonetheless, I generally enjoy writing. For me the process of writing is well ingrained in my routine for processing thoughts. Right now I have a lot of thoughts/emotions to process, so creating a blog on the specific topic of this adoption feels ok. I don’t know how long I will keep it, and I hope it’s more interesting than my financial writing, but here it goes.