many questions - Down Syndrome Message Board

Meghan · 04-10-2001, 11:49 AM

Hi, My name is Meghan and I have a beautiful 16 month old little girl named Lauren. I just have to say that I can't believe how much love I have for her. She is wonderful. We have been through a heart surgury and RSV this past winter. Now the doctors say that the heart valve she was to have replaced when she was around 20-25 yrs old, has to be replaced within a year or two. Has anyone gone through this type of surgury and what about the medications they have to take for the rest of their lives? Also I know that the teeth are delayed but can someone share their stories so I know what is in store? By the way this is a great site, I saw another sight where all they did was fight and judge each other. Thanks Meghan

mslinda · 04-10-2001, 12:22 PM

Hi, my name is linda. My son is now 11 and we were lucky on the heart problems, but I do remember he didnt get his first tooth until he was 2 yrs old. He goes to the dentist every 6 months. We found a dentist who works with children with special needs so she is very understanding.

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linda ;-)

Evesmother · 05-24-2001, 01:51 AM

Hi Meghan! We meet again!! Regarding the teeth...their mouths are small and the teeth can come in all over the place. Surgeries will take care of that IF it happens...and orthodontics (braces) when they are older fixes those smiles just fine! Downs can have good teeth but a lot have gum problems so teach that little one to brush after each time she eats. After all these years of dental work I'd have to say the ears are something to be more concerned about, so get yourself a good E.N.T. BTW: With your child's heart problems...it is important for your dentist to know that history and consult with her heart specialist.

hanwudi · 09-06-2005, 12:38 PM

I have a Ultrodound in 19 week and OB told me the fumer is short but very slightly. And then give me a blood test. The result is 1/2100. So, he told me not to worry because my final risk for d/s is 1/1000, less than 1/300. So, I don't need to have a amnio test. She also didn't arrange a follow up ultosound for me. recently, I found a lot of Down childen have a short femur. So I become very very worried. What should I do? Do you know any other people who has same experience as mine and finally have a healthy baby. Do you think my OB deal with my situation correctly? Should I do as OB told me, not to worry?
I am waiting. Thanks

jessicap3 · 09-14-2005, 06:54 PM

Hi Meghan,

Just wanted to share my story. I have a daughter with DS that will be 3 years old Nov. 16th. She is wonderful!!!! However from the start she had problems. Our first surgery was when she was hours old. She had an esphagial fistual sp? which meant that her esphogas did not connect to her stomache this is also your air way so she could not breath on her own either. We were told that it was the worst that they had ever seen and this was at UCI in CA which is a large hospital. We made it through that and thought we were in the clear. Yet another problem was found in her intestine she had fishers which would cause leaking of waste. Not good. They performed a surgery 16 days after she was born on her intestine. After 2 1/2 months in NICU she got to come home and I have been blessed with a truly wonderful child. She fights like noone I have ever meet. Her survial is amazing. Although I have not had the heart experiences my husband is a transplant receiptant 2 1/2 years post so I know those fears too. I wish you and Lauren the best. I will tell you that no matter what my daughter has made me a better person and I am lucky to share anytime with her.

Jessica