Personal Stories

Hello my name is Carolyn

After having a miscarriage and going through
a numerous amount of ultra sounds and tests
with this pregnancy I was told that my baby is
healthy and doing wonderful.

At about 42 weeks with the help of being induced
and going through 10 hrs of constant hard labor
our precious little Carissa Amber was born on May
11, 2000 7lbs. 10oz..At the time of birth the only
issues that were addressed was a mild/moderate
hearing loss.. The following morning during feeding
Carissa wouldn't eat or hold anything down, I got
scared and addressed it to the nursery, they called
in the specialist and pumped the stomach,
Carissa's appetite came back.

As Carissa start getting bigger and older I was starting to get concerned for she wasn't bearing any weight on the legs, holding rattles, or rolling over. So I started her in the birth to 3 program. At the same time I was having general public coming up and asking me if my little girl had DS. I always answered No for it was never brought to my attention by the doctors. At Carissa's 6,9,12 month well baby check appts. I kept asking the doctor if there is a possibility of Carissa having DS he kept reassuring me no but never did run any blood tests. When Carissa needed her 16 month well baby check I discovered that her doctor had resigned and I was out seeking for a new doctor for her. At the time of her appt. the new doctor ordered blood work and called my husband and I to come in, the tests came back positive. I didn't know what to think, that was the worse day of my life thinkin (DS, MD, what???) I went in with Carissa and the Doctor broke the news that Carissa is definitely MDS, I never cried so much in my life, I thought oh my gosh how could this be? How could this former doctor pass it up? With the help I was givin with the local Gene Pool and Genetics Counseling I realized that if I would of found out sooner of her diagnoses it really wouldn't of changed anything.

When Carissa was 1 1/2 yrs old my husband and I start having marital problems and Carissa went through a numerous amount of tests. (eye, ear, heart, thyroid, etc.) it was than that Carissa has been diagnosed with a nerve hearing loss and an underactive thyroid. Later on my husband and I divorced, and since I now have a wonderful man in my life that accepts and loves Carissa as his own. Carissa has start recieving summer school in 2003 she just finished up her second year and is loving it. She is progressing along well and no longer needs the physical, oral therapy, but still recieves occupational and verbal. We are currently dealing with some behavior and potty training issues with Carissa but we are progressing along well. Her growth is over 95 percentile on the DS chart. She is a very affectionate little girl (hugs, kisses, cuddle). Carissa's main interests are music/dance, art (drawing/writing), going bye bye, and watching t.v. (blues clues, teletubbies, boobah, sponge bob, Mr Rogers, Full House) Story time, and most of all being outdoors and riding her bike, and swimming.

Carissa and I have got through and been through a lot together, we take good care of each other. I'm sure there is more obstacles to jump over and I believe that if you want the best for your child there isn't any obstacle to is to hard to get through.

I'd be willing to share more detailed experiences for those whom would like to chat, and in return I could surely use more support myself. Feel free to email me at anytime