Children with Birth Defects or Genetic Disorders

[myfoursonsks]

If you have a child with a birth defect, serious medical condition, or genetic disorder, list your child's diagnosis so that we can see if anyone has children with the same medical conditions.

Son #1 - Bilateral Grade III Vesicoureteral Reflux (corrected on its own at 3 1/2), Asthma

Son #2 - Ideopathic Short Stature (stopped growing at 3 and is on HGH)

Son #3 - Tetralogy of Fallot, a hard stenosis of the airway, anal stenosis and was born with a 2 vessel cord (BT shunt placed at 10 days old and TOF correction at 15 months old)

Son #4 - healthy

 

[mommam58122]

dd#2 chromosome abnormality also possible chiari II malformation

dd #1 hyper kenesis (she is hyper but devolpementally at the level of a 21 month old and she is 3 and will be 4 in may) possible adhd supposedly too young to tell 

[myfoursonsks]

Do you know what the chromosome abnormality is?  I know of at least one mom on here with a child with chiari malformation.

Quoting mommam58122:

dd#2 chromosome abnormality also possible chiari II malformation

dd #1 hyper kenesis (she is hyper but devolpementally at the level of a 21 month old and she is 3 and will be 4 in may) possible adhd supposedly too young to tell 

[momofhnd]

both of mykids have neurofibromatosis.. or NF1 for short and my dd has asthma.

[ashleyrenee24]

DD# 1- Hydrocephalus, Sept Optic Dysplasia, Schiezencephaly

D# 2- Healthy

 

I forgot to explain what my dd birth defects are

Hydrocephalus is when you have too much fluid in you head and it causes a lot of pressure. DD had to have a shut to drain the excess fluid off her brain when she was 3 months old

Sept Optic Dysplasia is basically when your optic nerves are under developed

Schizencephaly is a brain malformation characterized by clefs in the brain

[heathermichelle]

My daughter was born with Tetralogy of Fallot with pulmonary stenosis. She had open heart surgery at 2 months to repair her heart

I wanted to share this video I made of my daughter awhile back. I am including her caring bridge website banner so please take the time to check them out.

Click the banner to view her website

[southernjess3]

this isnt as severe as most..but my 4 year old dd is bipolar, odd with paranoia

[JandBsMom80]

DS # 1 Healthy

DD#2  ARPKD/CHF and high blood pressure

[myfoursonsks]

See?  I never knew that you had went through the same thing as me.  My son has pulmonary stenosis, but I think that is fairly common to TOF.  Some kids have pulmonary atresia which is less common.

How old is your daughter now?

Quoting heathermichelle:

My daughter was born with Tetralogy of Fallot with pulmonary stenosis. She had open heart surgery at 2 months to repair her heart

[kjsmama0206]

it is not confirmed yet, but they think my dd (4) has ehlers danlos

[brookelynn0203]

I have a healthy daughter but I was born with a congenital heart defect as well.

Transpostition of the Great Arteries (TGA) or sometimes known as Transpostition of the Great Vessels.  Born in 1980 and corrected in 1981. Healthy to date!!! I know this is rare, its hard to find adults with heart defects because we are just now reaching adulthood due to the medical advances and surgical procedures that began in the late 70's so if anyone has questions feel free to ask.  I love helpful posts like this!  PS OP I have hooked up with lots of adults who survived TOF too!!!!