40 to 60 percent of children born with Down syndrome will have a congenital heart defect. When I was pregnant with LB they told me that she would not have a heart condition. We had over 11 ultrasounds, many 3D, and they never saw it. Upon LB's arrival, she was fine. After a trip to the nursery, I knew something was up because her hands were blue. THe nurse told me it was ink. Nuh, uh.
They took her back and we never got her back into our room. She then spent the next 5 days in the NICU because she had a heart defect. She had both PDA, ASD and VSD. Holes in both the top and bottom and the pressure from the heart to the lungs was very strong.
I was scared but nothing required surgery and she got to come home with just a note that we had to monitor her. At my 6 weeks checkup with my doctor, she advised me that she would have given me different advice had she known LB's heart was affected.
Nearly 90% of all pregnancies that have a diagnosis of Down syndrome are aborted. 90%. The VERY next day after that appointment, we saw LB's cardiologist where he told me that her heart defects had all resolved but one. On their own. She would need no additional treatment but would need an exam each year to check on her.
Can you imagine if I had listened to that Dr? I wouldn't have our little Bug. That's not acceptable. She may not think she is the perfect person, but I sure do.
I find this situation the most troubling. This very instance has given me the power to question and challenge the best of doctors. I refuse to take their word for it any longer and I am much stronger these days. I just feel so sorry for those mothers that aren't and that believe in the medical community to guide them with information. They often don't.
I am about to leave the house to drop of baskets to all of the hospitals in the event a baby is born with Ds. My hope is that the hospitals will share this info and a mother or family may meet my little girl or someone else with Ds before they listen to a medical diagnosis that could cause them GREAT amounts of pain for the rest of their lives.
Share the knowledge people. That's what this month is all about.
Until next time...