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!

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First newborn test - Apgar score

The Apgar score is a number which will be given after five standard tests are made with the newborn baby.

The newborn tests will be performed usually one minute and five minutes after birth (sometimes additional ten minutes later, too).

These are the standard newborn tests:

• Heart beat (> 100, 2 points; below, 1 point; absent, 0 point)
• breathing (regular, 2 points; irregular, 1 point; absent 0 point)
• movements (active, 2 points; some, 1 point; limp 0 point)
• skin color (pink, 2 points; bluish extremities, 1 point; blue, 0 point)
• reflex response (cries, 2 points; whimpers, 1 point; absent 0 point)

A normal Apgar score would be 7 points or above. Lower Apgar scores at the first testing are ok when they improve after the second testing.

A lower Apgar score at the second testing indicates usually the immediate attention of a pediatrician.

With Tim Johannes the newborn tests showed high/the best Apgar nscore at the second testing.
This was one of the reasons that there was no need for the pediatrician to check him earlier.

Otherwise the feeding intolerance would have probably detected earlier. As this kind of newborn test is not performed in the Apgar score a food intolerance can only be discovered by a careful observation of the newborn baby through the nurses/doctor/mother or parents during/after feeding (more about feeding intolerance in one of the next posts!).

Which Apgar Score did your newborn baby have?

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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.