Penelope and CHD - congenital heart defect PART I

Fact: 50% of people with Down syndrome are born with a congenital heart defect.

When we were waiting for Penny to be born, Scott and I thought that we were getting a "normal" and healthy baby. We didn't know if our child was going to be a boy or a girl, we didn't care, as long as he or she was healthy. We didn't elect for blood screening or further genetic testing. We didn't care, as long as he or she was healthy. The two ultrasounds did not indicate anything other than a healthy, normal baby. We didn't know our child carried a secret in her malformed heart. THAT we would have cared about, had we known. . .

Within minutes of her birth we learned that she had a lot of characteristics of Down syndrome. We were left alone with her to bond, but all of our questions about what the diagnosis meant were put on hold until the neonatologist arrived. At 9:00 am, when Penny was about 2 hours old, the nurse must have noticed that Penny was still an unhealthy shade of purple, and my daughter was taken away. The nurse didn't say anything to that affect when this happened. I was told only that Penny need to be looked over. When Nathaniel was born, I insisted all exams were done in my room so that he didn't have to leave my side, but with Penny, I was already worn and consented readily.

I was still in shock over the morning's events, and dead tired I should add since I went into labor around 9pm the night before and labored all through the night to deliver my beautiful girl at 7:00 am. So when the neonatalogist finally showed up some time after they took my daughter, it was a little hard to focus. My recounting of this morning's events, the morning of my daughter's birthday, is to the best of my ability.

Dr. Neo came into my room and introduced himself to Scott and me. I am sure my eyes were swollen from crying over the Down sydnrome diagnosis. But hell, I just had a baby with no epidural, so who cares what I looked like. He jumped right in to tell us that while Penny was being looked over, they realized that she was not maintaining a healthy blood oxygen saturation level (or pulse-ox). He said that they were working on her to keep her alive. That they had to put some lines in her to run some tests. And in my head, I jumped ahead, and thought that the next thing out of his mouth was going to be an unexpected, "We did everything that we could, but she didn't make it." Dr. Neo just looked so solemn, and was so soft, that I thought he was bringing me news of death. But in fact, Dr. Neo, went on to explain that there was something wrong with her heart and she would have to be moved to CCMC for examination.

My mother came in the door at this point with my son, my beautiful four-year old. I breifly wished I could be him, to not know all this chaos that was suddenly in front of me. I could see he had his spiderman pajamas under his T-shirt. A phase he went through so that he could change into Spiderman and be the Hero at a second's notice! My mother took one look at Dr. Neo, ignored the fact that he was right in the middle of talking to me and announced, "Who is this guy anyway?" with a wave of her hand directed at the doctor. I gaped and said, "Mom, he is the neonatalogist and he is talking about the baby." I don't remember if Dr. Neo recapped for my mother's benefit, or if he went on, but I further learned that he called a colleague at UConn's John Dempsy Hospital to come out and faciliate the trasport of my newborn. I later learned that my mother was annoyed that the doctor didn't introduce himself so she felt the need to intervene. I guess this is from all those years of being a nurse. LOL!

When Dr. Neo asked me if I had any questions, I couldn't think clearly enough to think of any. My mother asked him how soon I could be discharged. Where would I have been without her?!? At the time she asked that I thought she was crazy. Uh, hello? I just delivered a baby 3 hours ago! I wanted to forgot all this had happened. I wanted meals brought up to me. I wanted to sleep. I wanted to not have to leave the hospital and deal with whatever was out there in the world. Of course, a few hours after Penny was removed from the hospital, I couldn't wait to get out!

The plan was to move her by noon time and once she was in the hands of the cardiology team at CCMC, we would learn what was wrong with her heart and if she would need surgery.

More to come in PART II