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[Andrea7876]

Hi! My name is Andrea.  My daughter, Jaylyn, was born with a CHD. Tetrology of Fallot  w/Pulmonary Artresia.  She has a pacemaker, and she was also diagnosed with DiGeroge Syndrom.  Otherwise known as 22q11 deletion.  Some of Jaylyns current issues are feeding (her main source of nutrition is through a G-Tube. It's been a struggle since the day she was born), gastrointestional issues (slow digestion IMO and reflux) as well as development delays.  Her speech is a bit behind for her age.  But she understands EVERYTHING and certainly knows how to get her point across. She is almost 3 years old and weights just barely over 22lbs.  She is a little peanut!  As far as I know there are no signs of Autism.  And she was not born with a cleft pallet.  We have been involved with early intervention since I was able to bring her home after her surgery and have been working alot with sign language to help ease her frustration when trying to communicate with us.  I"d love to compare notes with other moms who are having similar issues with their children.

[jordansmom4life]

Hello there,

Everything that you are stressing and concerned about I have found is completely normal with digeorge. My son is 16 months old. He also has feeding issues. I find that with immense patience i was able to get him of of NG feeding and was able to feed him by bottle and spoon. He is doing rathe well. He also has speech delays. Early intervention is a wonderful thing. I find that sign language works but I am starting to wonder if it can cause further delay of speech because they are getting their point across without having to speak. Low weight gain is completely normal. Jordan just crossed the 20 pound mark just a few weeks ago and is still there. But as long as they are gradually gaining the doctors told me there is no problem. weightloss is obviously bad. Jordan has a heart defect as well and is looking at more surgeries. It is wonderful to hear that your daughter is thriving and kicking along. She will be fine. I find with these digeorge kids that they have an immense will to succeed in just about everything. Now thats something to admire. please keep in touch.

Sarah

[bailey0919]

Your story sounds very familiar.  My name is Saundra and my first twin, Kristyn is now 3 1/2 and weighs a whopping 24 lbs.  She was born also with ToF, but does not have a pacemaker or a G Tube.  However, feeding issues and developmental delays have been the norm for us.  She had terrible reflux and something called cyclic vomiting (the now diagnosed as migraines).  She sat on her own at one year and finally walked at 18 months, thanks to early intervention.

She also had a cleft palate (although only on the inside of the mouth), repaired last year, so she now gets speech therapy three times a week.  She is receptive and expressive language-delayed with poor speech articulation.  No signs of autism, but I have talked to her therapists about the possibility of ADHD and her teachers show early concern about mild learning issues.

Oh, and Kristyn has not yet been formally diagnosed with DiGeorge.  Three rounds of genetic testing have not confirmed DiGeorge, although her medical geneticist and other specialists follow her as if she has been.  She appears to be in the 5-10% of kids who have all the significant markers, but FSH studies and other tests don't show the deletion. 

Does Jaylyn have any siblings?  Fortunately, my other twin daughter has been perfectly healthy :)

[christy1977]

Hello andrea. My name is christy and   my son TJ both have TOF and 22q11.2 deletion.  TJ has speech delays and development delays. Tj also have weight issuse also. He is 5 years old and weight just over 40lbs. TJ dose eat alot! 
I also had the speech delays and learning issuses.  TJ is now in school and doing great he is talking alot!! and he is a pair with everthing else but his speech.  TJ is also a social boy! hes not shy at all.  but 22q very from person to person.
I just had my 2nds ohs to replace my pulmonary valve back in december.
tj has had 2 ohs one a bt shunt and then his full repair.

in love and light always blessed be
christy and tj

[Stephanie1015]

Hello everyone! My name is Stephanie and I have a 3 month old son named Ayden. He has Digeorge Syndrome. I am so glad I have found a few other people that have kids with this. I have felt so alone not knowing anyone that has dealt with it, other than the doctors of course. He had heart problems too that he had open heart surgery to fix them when he was 3 days old. They weren't able to repair everything but said that as long as it doesn't cause him problems they wouldn't go back in again. Thank you all so much for telling your stories!! And thank you for listening to mine.