Video about EEC syndrome

This video contains the most important issues persons are facing who "suffer" from the EEC syndrome (Ectrodactyly-ectodermal-dysplasia-cleft-Syndrome). The video is presented by the National Foundation for Ectodermal Dysplasias (NFED).



At the moment we don't see such severe problems like many of these kids in the video but it will take another year to fully recognize the different problems which he might face in the future:

• Hair growth
• missing teeth (at the moment it could be that two teeth are missing as they didn't grow yet but should have been there already)
• growth (at the lower level for its age group)

The problems that we are facing is less his hands and fingers as most persons don't recognize them because you usually look in the face of a baby ;)

It will be more about finding the right doctors and get an appropriate treatment for all the "problems" that might come. And the time it will take to heal his wounds as he is an active boy who likes to crawl, walk and clap his hands.

Information about the EEC-Syndrome of our son

Image via Wikipedia

We wanted to share some information about the EEC-Syndrome (Ectrodactyly-ectodermal-dysplasia-cleft-Syndrome) of our son as there is a high possibility that he might have this kind of genetic disorder.

I bet you know some persons who "suffer" from the same condition. Mainly these are the persons with cleft lips/palate which gets to be operated while they are babies or young toddlers.

Timmy doesn't have the cleft lips but he has only nine fingers and they are split in the middle (imagine a lobster's claw).

As we will go back to Germany in a few weeks, we have to make several decisions on who shall perform the surgeries and if we should perform the surgeries as there are always risks for such small babies.

The information about the surgery which we got from the Hospital in Kuala Lumpur looks like this:

• several hours for each operation
• at least 2 or 3 operations for each hand
• healing process takes several weeks

We will publish tomorrow a video from one of the biggest EEC-Syndrome self-help groups in America.

There you can see how the kids hands, mouth and feet will look like before the surgery, after the surgery and during the healing process.

(Just saw that Jessica Simpson seems to be an ambassador for Kids with cleft lips and palate. She is supporting "Operation Smile" a foundation who provides free surgeries for those kids.)

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• Baby that survived botched abortion was rejected for cleft lip and palate (telegraph.co.uk)
• Jessica Simpson: Operation Smile Gala Tonight! (justjared.buzznet.com)
• Breakthrough for babies born with severe cleft palates after experiments at ISIS (scienceblog.com)
• Jessica Simpson: Say Cheese! (justjared.buzznet.com)

Visiting our relatives

Hello visitors and readers of All about babies and kids,

like you may know already we are already in holidays (join our Holiday-Contest to win prizes worth over 200$ + 25.000+ EC, good luck).

We are visiting the relatives in Penang and Kedah in Malaysia. It's our first visit together with our baby boy Timmy!!

My grandma and my aunties are longing to see Timmy since we've mailed them the pictures of our cute Timmy XD. Well, i do hope they don't focus too much on the Timmy's hands and nine fingers. I know they'll do and give us several advises :( But what ever, I don't know how they will react when they see him the first time as they don't know yet, how it really looks like.

I look forward visiting them and i hope there won't be too much critics on me as mother. You have to know, Chinese are sometimes very superstitious, especially in cases when your kid isn't developed "normal".
They might blame me on causing this appearance to Timmy, for example by using a scissor and cutting things during pregnancy (as if this would cut his finger in womb??) *LOL*
Frankly, i do hate to hear these kind of talking! But i know, it will happen... again like on the first day of his birth :( ARGH!!

However, i think it will still be a happy journey because nevertheless Timmy is really cute and yeah... clever ... XD

Ok, hopefully we can update the blog if there is an internet connection in my grandma's house.

EEC-Syndrome: Our nine-finger son

The EEC-Syndrome is a complex genetic disorder which can influence most of the body parts. Most common are the cleft lips/palate, there a gap on the upper lip/mouth will occur. Our son is NOT affected by cleft lips/palate!

The visible appearance for our son is the 'claw-like' fingers and the missing of fingers on one or both hands/feet.

Usually two fingers are combined and then it is followed by a gap and the other two or three fingers are a separate pair/triplet like you can see on the pictures from our son Tim Johannes.

This disorder of the skin/bones has no effects on his future development (physically, intellectually, mentally). It has mostly only to do with appearance disorder like we describe it below the picture.


Left hand with five fingers, the gap is between the middle and the pointing finger

Right hand with four fingers and gap between the ring finger and the pointing finger, the middle finger seems to be missing


Other features in connection with the EEC-Syndrome could be in the future:

• missing or abnormal teeth
• hearing loss
• kidney problems

Usually gene or chromosome tests are made to see which kind of features could appear in the future because some of the features are already localized in the chromosomes.

At the moment we have to wait for the results of these tests. The doctors said we should get them at latest by end of April. We will keep you updated.

Do you have also a kid with some health problems?
Share your thoughts about it with us in the comments!

If you like to know the further development of our son, just subscribe to our RSS-Feed and get informed as soon as a new article is written about the background of his development and the explanations/ guides for parenting

The first hours of our newborn baby

Hello dear readers,

i'm Tim Johannes. I was born on 19th of February 2009 at 2:57 pm in Johor Bahru, Malaysia. My weight has been 3,05 kg and my height has been 50 cm. My head circumference was 34 cm.

My Apgar Score one minute after birth has been 9, five minutes later it has risen to the highest score, 10.

The nurses told my parents that i'm one of the special newborns because i have nine fingers. This means i would have one of the rare EEC-Syndromes (my parents will always explain the bold written scientific-sounding words in the next post!).

At 4:30 pm i was brought to my parents because my mum is an exclusively breast feeding mother. I felt sleepy after the delivery and my eyes were most of the times closed but i heard many different voices in the room. It seemed like the nurses wanted to tell my mother something about how to breastfeed me.

I just lay on the warm and soft breast of my mum in this time and enjoyed this feeling for almost 30 minutes. In this time they tried to open my mouth so that i could latch on mummy's nipple. In the beginning i didn't know what this was all about and so it didn't interested me much.
After some minutes i opened my mouth and tasted for the first time a small amount of breast milk from mummy's nipple.

I think my mum wanted to feed me again on the other breast as she changed my position on the breast but at this time i slept already again like you can see on the picture below :-)

The next feeding time was around 7 pm and this time i got much more milk than before. This tasted very good. I like the smell of my mummy and her breast milk. I have to try to remember the taste and the smell of both!

The third feeding has been around 9 pm. This time it was earlier because the nurses heard me crying and they took me to my parents room in the hospital. But after tasting again a small amount of breast milk and with some difficulties in latching-on, i started to fall asleep after some minutes. I guess my mum tried several times to open my mouth, so that she could put her nipple in it but i was too tired form the delivery and sucking can get exhausting, too.

Around 9:30 pm i choked the breast milk which means i couldn't keep it in my stomach or it went into the airway system and the pediatrician had to pump and clean the inside of my throat. In the end they had to support me with oxygen because i could only hardly breath after this kind of choking!

The pediatrician told my parents that they have to send me to another hospital with better equipment in case i wouldn't stabilize my breathing in the next hours and as he checked me completely he wasn't sure if there are also "abnormalities" inside of my body (with my organs) which could have caused this type of choking. Otherwise he guessed it would be a feeding intolerance.

In the next posts my parents will explain the words

• Apgar score
  
• EEC-Syndrome
• advantages of exclusively breastfeeding and the importance of early breastfeeding
  
• how to breastfeed
• feeding intolerance

Which experiences did you make on the first day of your newborn baby?
Share your experience with us in the comment section.

If you like to know the further development of our son, just subscribe to our RSS-Feed and get informed as soon as a new article is written about the background of his development and the explanations/ guides for parenting.