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Dutch / Nederlands

Andy



April 24, 2008
Andy was born on October 7, 1997, around 19 minutes past 4 o'clock in the afternoon in Enschede, the Netherlands, as the son of Frans and Li-Xia . He has the Dutch nationality. His mother had very painful contractions, much more painful than with the birth of Annabel, but once she could start pushing, everything went rather smooth. He was 52 cm long and weighted about 3150 grams.

Andy was examined rather careful, because during the first ultrasound, an abnormal thick Nuchal Fold was found, raising the suspicion that he might have Down's syndrome. During the second ultrasound, about six weeks later, none of the typical abnormalities for Down's syndrome were found. The examination at birth confirmed that he did not have Down's syndrome, but some strange features were noticed, namely:

  1. Thick neck.
  2. Slightly low muscle tone.
  3. Short fifth finger on both hands, with the top part turned inside.
  4. Rather large ears, where his right ear is slightly malformed, almost looking like turned inside-out.
  5. Second toe on both foot placed slightly higher.
  6. Triangular shaped nostrils.
At least, non of these features were considered to be a reason for alarm. The features 1, 4, and 5 have been seen with other members of Li-Xia's family. There was no reason for him to stay in the hospital, so he went home with the two of us.

Arriving at home, we found out that the neighbours had decorated our house according to the local customs to welcome the new baby.

Birth card

Genadig en barmhartig is de HERE, lankmoedig en groot van goedertierenheid. Psalm 145:8

Blij verwonderd zijn wij dat God, de schepper van het leven, ons toevertrouwde:

      Johannes Abraham

Zijn roepnaam is: Andy
Hij is geboren op 7 oktober 1997.
Hij weegt 3215 gram en is 52 cm lang.

Frans en Li-Xia

Translated into English, it says: From his fullness we all have received, grace upon grace. John 1:16. We are happily surprised that God, the creator of life, entrusted us with: Johannes Abraham. His calling name will be: Andy. He was born on October 7, 1997. He weigh 3215 gram, and is 52 cm tall.

About his name

You might have noticed that his calling name ("Andy") does not resemble his first official name ("Johannes"). In Dutch "John" is translated as "Johannes", which is closer to the original Greek name, from which it is translated, than "John". We first picked his calling name. First of all, because it has a nice meaning in Chinese. For "An" we picked the Chinese character for grace, which also happens to be the first character used for how the Chinese write "Enschede". For "dy" we picked the Chinese character used for "leader", which happens to be the first character used in the name "Dihua" the old name for Urumqi, the place where Li-Xia was born. Although in the English speaking world, "Andy" is short for "Andrew", we finally picked "Johannes" because it is a name that has a long history in our family, and because its meaning matches that of "Andy". Much later, on September 31, 2000, I read in a Dutch dictionary of calling names (Spectrum Voornamenboek, J. van der Schaar, Het Spectrum ISBN 90-274-4109-X) that "Andy" is short for "Johannes". Quite interesting, but I think it talks about "Andy" produced in Dutch way, in which the "An" sound much like the "an" in "Johannes". We pronounce "Andy" in the English way, because then it sounds the same as in Chinese, and also because the Dutch pronunciation is being used as a brand name of a detergent here in the Netherlands.

Hormone problems

An abnormal high value for TSH (thyroid-stimulating hormone) was found during the standard blood screening test which is performed on all babies in the Netherlands. When the test was repeated, a slightly higher value was found. We were send to the pediatrician for further examination. He performed a number of blood tests, which revealed that there was nothing wrong with the T4 growth hormone level.

In the following weeks we regularity visited our pediatrician, and additional blood tests were performed. Nothing abnormal could be found, and the TSH for level slowly became normal again.

Feeding problems

Mid November our pediatrician noticed that Andy's weight was falling behind. We also started having problems with feeding. It looked as if Andy lacked the strength to drink. Also he started to have absences, usually when he got angry for some reason.

At the end of November Andy was accepted in the hospital, and all kinds of test were performed, but nothing abnormal was found. The chromosomes of the lymphocytes from his blood were analysed. No structural abnormalities were found. His karyotype is 46,XY, which is that of a normal male.

After one week he was released from the hospital, because his weight improved, but not for long. One week later he was hospitalized again, and the feeding problems became worse. On December 26, 1997, a feeding tube (through his nose) was inserted, because his intake was too low. He drank less and less by himself until he refused to drink completely. At the end of January, after we had learned to feed Andy by tube, he was released again.

January 30, 1998: One drop of water is 0.045 ml

February 21, 1998: Tube in his nose

March 29, 1998: First time to church

Pallister-Killian Syndrome

For a long time, it was thought that Andy did have some kind of metabolism problem. Because of this reason we were sent to some specialists, but they also could not find anything.

From there on we were introduced to a clinical geneticus, who, noticing bald spots above Andy's temples, suspected tetrasomy of 12p.

March 9, 1998

Using the Internet, I found out that tetrasomy 12p is also known as the Pallister-Killian Syndrome. (Pallister-Killian syndrome is a dysmorphic condition characterized by a tissue-limited mosaicism; most fibroblasts have 47 chromosomes with an extra small metacentric chromosome, whereas the karyotype of lymphocytes is normal.) Below some resources about this syndrome. After reading the above resources, we felt that Andy did not have this syndrome, which was later on affirmed by the chromosome analysis of the fibroblasts from Andy's skin cells. Again no abnormalities were found, thusruling out the PK syndrome.

May 4, 1998

I found the home page of V.O.K.C.V.S., the Dutch organisation for parents with children that chronical food refusal and tube feeding.

Kabuki syndrome

In August 1998, we visited a specialist for feeding problems. After seeing Andy's hands, he remarked that Andy might have the Kabuki Syndrome. Searching the Internet, I found the following pages: Later that month some slides were made from Andy to be reviewed by the clinical geneticus.

October 31, 1998

We attended the second contact day of the Dutch Kabuki Network. There we met several parents, who after seeing Andy said that it was like seeing their own child when at his age. We decided to take the point of view that Andy does have the Kabuki Syndrome, until it is clearly that he does not.

Does he have the Kabuki Syndrome?

The experts are contradicting themselves. On November 25, 1998, I was phoned by a clinical geneticus who affirmed our conclusion that Andy does have the Kabuki Syndrome. However, two days later, we visited another clinical geneticus, who said that he was not convinced. He said that if an analysis would be made, he would be very likely score very high with respect to the Kabuki Syndrome, but he also said that because of the broad range of characteristics, the Kabuki Syndrome does rather easily show up. He asked us to contact him again a year from now.

November 25, 1998: Annabel writes his name

November 28, 1998

Picture of Andy and Annabel.

December 29, 1998: 7850 grams

For almost half a year Andy's weight has been going up and down around 7250 grams. I created a the page Feeding Requirements for Boys in order to calculate his (mal)nutrition state. Finally, Andy started to gain some weight again.

January 29, 1999

I talked to him over the phone.

May 14, 1999

While driving to my office, I was forced to insert the feeding tube along the side of the highway, all by myself. Li-Xia does do it every day.

June 25, 1999: 9530 grams and eating a cookie

Andy's weight has normalized around the 10 percentile line according to the feeding requirements for boys.

July 5, 1999: Feeding Andy outside a cafe

July 6, 1999

Yes, we know it for sure now, at least as sure as can be possible. Andy does have the Kabuki syndrome.

July 30, 1999

Andy recognized my voice over the telephone.

September 25, 1999

We attended the third Kabuki day organized by the Dutch Kabuki Network.

October 27, 1999

Li-Xia is getting good at feeding Andy food with a tube in his mouth

November 11, 1999

Today, for the first time Andy sat up all by himself. We feel about this as other parent do when their child walks free for the first time. We are going to have cake when Andy will walk free the first time!

December 5, 1999

Picture of Andy and Annabel.

January 1, 2000: Screaming because of fireworks

January 6, 2000

Today we received the CD-ROM from Catalpa with their presentation. The day-care center that Andy attends belongs to Catalpa. We received a copy of this presentation because it contains pictures of Andy under the special project participation handicapped children.

Belching

It's quite funny, but it is only until recently that Andy started belching. As a baby he never did this, as babies usually do. And then all the time he was tube fed, he also did not belch. But since we feed him through his mouth, he started to belch. And how!

Stories about Andy

Below some more stories about Andy, as they are recorded in the online diary of his father:

2000

2001

2002

2003

2004

2005

2006

2007

2008

2009

2010

2011

2012

2013

2014

2016

2018

2019

2022

2023

2024

Pictures of Andy

Growth curves

Mixture of official (hospital) and private measurements. Body length is shown in purple, weigh in green, and head circumflex in blue.

(Made with dygraph Javascript library. Drag over part of graph to zoom in. Double click to restore.)

Flights he took

  1. July 24, 2006: Schiphol - Beijing flight KL897 with KLM 17:10 to 08:35 seat 39A in the city of Karachi PH-BFK, a Boeing 747-406M. Take-off at 17:41, touch-down at 10:25.
  2. July 25, 2006: Beijing - Urumqi flight HU7145 with Hainan Airlines 13:40 to 17:45 seat 20F in the B-5139, a Boeing 737-84P. Take-off at 14:20, touch-down at 18:18.
  3. August 12, 2006: Urumqi - Beijing flight HU7246 with Hainan Airlines 12:50 to 16:15 seat 14D in the B-2492, a Boeing 767-34P/ER. Take-off at 13:20, touch-down at 16:26.
  4. August 17, 2006: Beijing - Schiphol flight KL898 with KLM 10:35 to 14:35 seat 38A in the City of Freetown, PH-BFF, a Boeing 747-406M. Take-off at 10:39, touch-down at 14:04.

Video's

Andy loves video's, and that is why many of the video's we have were bought for him.

Links about the Kabuki Syndrome

List of abnormal features

Below a list of abnormal features is given, that we cannot recognize as being inherited from either of our two families:

Family album | Home page of his family