does anybody else have a baby wil several madical conditions?

Emilie - posted on 01/21/2010

My son was born at 26 weeks. We had a very rough start with multiple medical conditions and surgeries. He is 4 1/2 now and things have calmed down medically. He also had to have a surgery because his soft spot closed early. He had some bleeding in the brain as well. It is hard, but it gets easier. Just take it one day at a time.

Lynn - posted on 01/21/2010

My son Mario has a rare chromosomal 4deletion.He is not only mentally but physically challenge.He also has seizures and has to be checked every 4 months for tumors in his kidneys.The dr's can't tell us too much because it is so rare.I am so sorry for what u and your family r going through.Your little one will be in our prayers.

Tina - posted on 01/20/2010

I'm so sorry to hear how sick your daughter is! You're right; it is so very hard when you're going through all the doctor visits and hospitalizations and everybody else you see has a healthy baby. It's heart wrenching; you're the parent but you end up feeling helpless when you have to hand your child over to medical personnel. My son has Coarctation of the Aorta, a bicuspid aortic valve (should be tricuspid), a heart murmur and asthma plus when he was born, he had a growth on his neck. He was hospitalized 9 times before he turned one and his first surgery was at 8 days old. We moved to Baltimore when he was 7 months old so he could see doctors at John Hopkins and my son's doctor here in Phoenix was trained by the cardiologist he saw at John Hopkins. All told, he's had 1 heart catheterization, 3 surgeries - one for his neck & two for his aorta, and been an inpatient in 10 hospitals in 5 states. My son is 16 now. There are a lot of things he can't do and he had a hard time emotionally for awhile but we found support groups and other kids with similar problems. He goes to a camp for heart patients & he looks forward to it every year. His best friends live hundreds of miles away but they're his best friends because they share so many of the same experiences. They've been in the same hospitals, had the same procedures, had to travel out of state & live at the Ronald McDonald House, have the same restrictions (no sports, diet, etc). And it's so nice for me & my husband to talk to other parents going through the same things. Try asking your doctor if there are any local support groups. Also, try googling her condition & see if there are any support groups online. It makes all the difference in the world to have people around you who really know what you're going through. Good luck and remember, Love doesn't fix everything but it makes the bad times bearable.

Theresa - posted on 01/20/2010

she has a cleft palet we found when she was born at 1st they thought she had down syndrome but now they say she has cruzon syndrome which is premature cartalige in the body. So she had to have surgery on her head to open her soft spot back up becaused it closed too early. she has a feeding tube because of the cleft she has a hard time eattin by mouth. A trach tube to help her breath because her trachea is small.she had bleedin in her brain so they had to go in her head put a tube from her head to her stomach. And because of the trach she gets sick so easily and i cant take her to the park or the beach basically cant take her out. when shes about 3 or 4 they have to make fake bone for her nose. and her hearing we have to get tested again shes fail 4 out of 4 hearing test before her head surgery. and she has problems with her eyes....they say that everything is repairable and i hope so. but its so hard....

Ashley - posted on 01/19/2010

My son was sick when he was born only found out at ten days though i spent over a month and a half in the hospital with him luckaly things are ok now though. i hope your baby is ok i no its scary with sick kids. Good luck best wishes

Amanda - posted on 01/19/2010

what do you mean? my little boy have allergies to everything (no seriously there is a 3 page print out I keep in my car of foods he cant eat and animals he cant touch) and he had very enlarged toncils and adiniods and was legally deaf until he had surgery October 11th. hes been sick pretty much constantly sincehe was born but now that we know the allergies hes been doing better. The biggest are milk and soy which makes life very interesting, I wish that more people understood that he cant eat these things and that he is normal anyway.