developmental delays in baby with CHD

Ali - posted on 10/01/2011 ( 2 moms have responded )

13

0

1

(have also posted this in special needs section, not sure where I'm best to get answers!)

I have a wonderful 10 month old son. He developed feeding problems at birth that turned out to be congenital heart disease. To cut a long, long story short- he had open heart surgery at 2 weeks old and spent his first 4.5 months in hospital- most of it in ICU. He is now doing well and his heart is showing signs of healing. He still has a feeding tube, and a stoma- (which will be reversed soon- yay!!)
Anyway, my question relates to his development. He has hypotonia (low muscle tone) and is developmentally delayed. When he came home, he was probably worse than a newborn in terms of his gross motor development, he didnt have head control and was really floppy. WE're working wth physio and getting some progress- he can now roll. He is still floppy and can't sit at all yet. Otherwise his development isn't too delayed- he is happy and smiley, laughs and babbles, he's a great little boy! He manages to eat solids and can hold things and transfer thm from hand to hand.
I just have worries about how floppy and delayed his motor development is. I wondered if any of you have experiene of a term baby who ended up spending a long time being very ill at birth, and how this impacted their development. I don't knoe how much of this is just to be expected, and how much will be reversible.
After all he's been through, I am so happy to have him home and doing pretty well, but I'm now starting to think about his future and what might lie in store for him. i appreciate any advice/stories from anyone who has been through similar!

2 Comments

View replies by

Ali - posted on 12/16/2011

13

0

1

thanks teresa, that sounds like you sn is doing well . Daniel is now sitting really well (he's 13 months now) and is starting to bear a bit of weight of his legs, so he's making a lot of progress. If he's walking when he reaches 2 I'll be very happy. He has probably another 2 heart operations in the next year, so I'm hoping that doesn't hold him back too much

Teresa - posted on 12/15/2011

7

0

2

hi my son is now 2 years old, he has had two heart ops his first one at two weeks old. he spent a lot of his first year in hospital and when he reached his first birthday he still couldnt sit or anything he just used to sit in a baby bouncer and i started to think that he wouldnt be able to do anything. but he started sitting on his own when he was about 1yr 3 months and now that he is two he has started walking.so i am sure your son will get there to but it will just take him longer than a normal child. i hope this has helped

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms