Specialist appointment

spiritseer

We go tomorrow to see a specialist because they found on my last ultrasound that my little Jack has a heart defect, cysts on his brain and a misshaped head, from everything that I have read this usually means down syndrome and I am 100% ok with that, I'm 42 so I knew going into this pregnancy that there was a greater risk, what really worries me is the heart defect.

Anyone have any advice or stories they could share?

cturtle78

My 12 year old nephew has DS and has had 3 heart surgeries. The first was when he was a few months old. The most recent was about a 1 year and a half ago. I will tell you he had not complications and would recover so quickly, you would be surprised. He had a hole that had to be repaired and then as he got bigger they had to work with it and the scar tissue from the previous surgery. Doctors can do amazing things. 

Shayna0182

cturtle78:

My 12 year old nephew has DS and has had 3 heart surgeries. The first was when he was a few months old. The most recent was about a 1 year and a half ago. I will tell you he had not complications and would recover so quickly, you would be surprised. He had a hole that had to be repaired and then as he got bigger they had to work with it and the scar tissue from the previous surgery. Doctors can do amazing things. 

This!  There was a little girl who was across the aisle when ds was in the nicu.  She was born pretty small, and by the time ds was released, she had already had a couple of surgeries.  I wondered what happened to her, and then we ran into her and her mom at the nicu reunion.  It's amazing what they can do.

goldenleaves

My daughter has Down syndrome and had open heart surgery at 6 weeks old. With the heart defects common to Down syndrome the repair is usually between 3 and 6 months old. We were not the norm but Lauren went into heart failure really early.

Today she's a happy, smiley, giggly, cuddly and stubborn 8 month old. She definitely has delays but she is happy and she works really hard!

The heart stuff is rough really rough. But the difference we see in her today is amazing, it's indescribable.