Tuesday, July 27, 2010


Cameron was my first child and I had always planned on nursing. However, with him having Down syndrome and a heart defect that didn't work out so well so I pumped. I HATED every minute of it but knew that I was providing my baby with the best milk possible.

Mitchell was my second child and was born healthy and "typical". I nursed him, only pumping while away at work. I still HATED pumping.

Having the third baby and no longer working I was SOOO looking forward to exclusively nursing her. BUT she, like Cameron, has Down syndrome and a heart defect.

Has anyone successfully nursed a newborn with Down syndrome AND a severe heart defect. I say severe because she WILL require surgery, it's not something that is going to fix itself.

I just remember with Cameron, it was a HUGE challenge to get him to even wake up to take a bottle. Then keeping him awake long enough to finish was challenging also. We had to set our alarm clock every two hours throughout the night to wake him up (taking off all his clothes and sometimes even having to put a little cool water on him to wake him up enough to eat). Repeating the process when he fell asleep before finishing.

Any success stories and/or tips would be GREATLY appreciated.


Stephanie said...

I wish I could give you a success story. Aiden wasn't able to nurse either and he required a ton of additional calories due to his heart defect.

Simply, Sarah said...

Our baby "only" had to be woken up every 4 hours to eat to get those extra calories before his heart surgery. He did nurse, but was frustrated when he did, causing more strain on his heart. He was able to have breast milk mixed with high-calorie formula.

Mommy to those Special Ks said...

I'm just catching up and wanted to say I'm praying for you and your little princess! I don't know anything about nursing a child with a heart defect, but I hope you can find someone with lots of good info for you! Hang in there!

Jo said...

I'm Jo from Italy, and just came across your blog... I have only read your last post (so far :),looking forward to continuing tomorrow), but just wanted to let you know it can be done.
Our "little" Luna is 7 years old now, and I nursed her for 1,5 years - and through her open heart surgery at 3 months (AVSD). I guess we made it partly because at the time I did not know "better" (or that it was another of those things she was not supposed to be able to do).
She was pretty much glued to me those first months, nursing, taking a nap, nursing again, so it was probably more tiring than with her big sis, and we also started giving her solid foods shortly after the surgery (she did not like the bottle so formula milk for extra calories would not have worked), and although it was a little earlier than I would have liked, she has been a great eater from day one - no problems with different textures, no allergies, and from an early age we've been able to give her pretty much anything without worrying she'd choke.
If there's anything else you'd like to ask me please let me know.