re: Introduce Yourself!

My name is Rikki i am 21 and i have a three year old daughter that has a rare genetic disorder called tuberous sclerosis complex she was diagnosed at 3 months. TSC is a rare genetic disease that causes tumors in main organs of the body, my daughter has them in her heart, her eyes, her skin, and brain. she also has epilepsy and has several types of seizures. after 2 1/2 years we have finally got them under control. she was severely delayed until she was 2. Now she is almost 'normal' (hate that word) she has been in early intervention since she was 6 months old.

Hi, I'm Danielle, I'm 22 and I'm a full time college student. I have a beautiful daughter who is 2 and a half. I was around 20ish weeks pregnant and the doctor brought me bad news. There was a hole in my daughter's stomach...

I went to a specialist who diagnosed my daughter, they did a bunch of tests and such and she did not have cystic fibrosis... and they said she was getting better. What a relief.

Well, at 32 weeks, if I recall, I was put in the hospital for premature labor. It really sucked. I got out of the hospital then at 36 weeks my water sprung a leak.

I had my beautiful baby girl.

Only to find out she was sick. Her intestines ruptured and died. After surgeries later, 3 months in the NICU and a hell of a lot of smu*f I didn't need, I dealt with it.

Today my daughter is 2 and a half and has autism. I don't know what type, she's on the spectrum though.

It's a tough road.

hi im around 30 weeks and just found out my baby has a brain deformality and i was just wondering how did u girls deal with hearing ur babys were not going to be healthy

My names misty & my son joseph was born with a unilateral cleft lip and Polydactyly also on the left side

I'm Samm, I have a 5 year old little girl named Hailey who has Down syndrome. I got pregnant when I was 18 and didn't find out until I was around 5 months along. I had an ultrasound and my doctor noticed that there was an echogenic focus on her heart. I was sent for more ultrasounds and those revealed that she possibly had dueodenal atresia. I refused the amnio and continued to go my specialist who couldn't really tell me much as she herself didn't know what was going on.

The day I had her they took her to Riley Children's Hospital for further testing which revealed she had 3 heart defects and she did have dueodenal atresia. The DA would require surgery the next day, but the heart defects healed on their own. A few days later I was told she did have Down syndrome.

She's a healthy, happy, wonderful 5 year old little lady today. It's been an adventure to say the least!

I'm Bea
My daughter was born 12 days ago and we found out she has extensive brain damage caused by a stroke while still in utero. She was having seziures the first couple days but she's now on medication to stop them and has been fine since then.
I'm sort of still in a state of shock. I'm finding it extremely hard to deal with.
especially since it's a giant "wait and see" game. nobody can give me any kind of answers for her future.
I thought once we were finally home with her I would be okay, but I'm not.
I wish things were so different.

Quoting Dallas ♥ Isla:" I'm Bea My daughter was born 12 days ago and we found out she has extensive brain damage caused by a ... [snip!] ... for her future. I thought once we were finally home with her I would be okay, but I'm not. I wish things were so different."

im sorry. that must be so hard to deal with

Quoting Misty Walls:" im sorry. that must be so hard to deal with"

thank girl. I'm trying hard but I think my hormones are just crazy right now. I hope I'll be able to pull it together for my baby girl  

Hi, I'm Jessie. I'm a mother to a beautiful 4 month old little girl who possibly has BBD.

Hi my name is Carol & mum to 3 & a baby on the way. My oldest son who's 9 has moderate learnng difficultes & 2 years behind where he should be bless him. I'm pretty sure there's something else going on with him as he's literally bouncing off the walls at times, he's on Melatoin to help him sleep otherwise he's up until all hours of the night. I really feel lke i'm banging my head against a brick wall & getting no where fast, i've been fighting this since he was 4, it's so frustrating. If he's nice & calm he's such a sweet, lovable little boy

hi just wanted to send my prayers out to all the parents with special needs children u never knw what you are facing till u actually have a baby . you guys are some very strong women

My youngest daughter has a large VSD and is having open heart surgery soon.

My name is Kimberly and my 3 year old son Thomas was just put into remission on January 11th. Thomas at the age of 23 months was diagnosed with Stage 1 Nephroblastoma. he is currently in remission and will not be cancer free until he has been in remission for 5 years. We enjoy every day with our special man and do not take anything for granted

We found out a few weeks ago that my sons teacher thinks he's got dyspraxia so were waiting now for a referral back to the peadatricion to get a diagnosis.

Hi I am Lauran I am the mother of one child, a six year old boy with PDD-NOS. he has speech issues and emotional developmental delays