For those who don’t know, let me tell you a little bit about Scarlett.
When I was in the first trimester of my pregnancy with Scarlett, I was referred to a specialist for a genetics consultation. My OB/GYN told us that he was required to send us for the consult because I have an inherited condition, PKD (Polycystic Kidney Disease) and that the specialist would do an ultrasound to check my baby’s kidney development and give us a statistic (50%) for the likelihood that my child would have PKD. He said we should only have to see the specialist this one time and that we would likely never even speak with the actual doctor. We drove 80 minutes away to the specialist appointment in good spirits. One of the technicians did an ultrasound and then we went in to speak with a nurse about the statistics. As we were ending our consultation with the nurse, she received a call to have us wait in an exam room to speak to the doctor. When the doctor came in, he hovered by the door the entire time. He explained that during the ultrasound, they found a growth on the neck of the fetus (his words) called a cystic hygroma. He said that 98% of fetuses with CH’s during the first trimester miscarry and that the majority of those that make it to term have serious chromosomal disorders, such as down syndrome or worse. He then said, “I recommend termination. You may schedule that with the nurse at the front desk.” After saying those exact words, he immediately left the room.
We went home devastated. We had just started to get excited about becoming parents and here was this doctor saying that we wouldn’t be. There wasn’t a chance that we would terminate the pregnancy. We decided to hope for the best and prepare ourselves for the worst possible outcomes. After speaking with our primary OB, we decided to switch to the other doctor in the specialist’s office. For the remainder of my pregnancy, we were cared for by my local OB and the amazing Dr. F in Columbia. Around the 25th week, the doctors could no longer see the CH, but they started to see abnormalities in her heart. Because of where my placenta was and because she was a squirmy girl, they had trouble pinpointing what exactly was wrong. We were told to prepare for a possible heart problem and for a possible chromosomal issue since we had decided not to have an amnio or CVS. We had alternating visits with the two doctors during every two weeks until the third trimester, then alternating visits every week. For the last month I was pregnant, I saw a doctor twice weekly and they did non-stress tests once a week. We induced labor a week early and after a kind of horrific labor experience (which I won’t scare you with), our beautiful miracle was born via C-section at 2:56 am on July 1, 2008. 
The doctors couldn’t find any markers of a chromosomal abnormality, but ordered a FISH test to be sure. When she was 3 days old, they did an echo at our request (because of everything that the doctors had thought they’d seen during pregnancy) and discovered four defects. Her condition is called Tetralogy of Fallot. She was considered a ‘blue baby’ and had a bluish tint around her eyes and mouth. Her feet were bluish also. She was only getting around 25% of the oxygenated blood that a normal baby gets. We were told that we could not allow her to get upset or that she would likely die. They told us to rush her to the ER if we couldn’t get her calmed down within 5 minutes because her body couldn’t handle the added stress. Luckily, we never had to deal with a Tet fit. She was a miraculously easy baby. I don’t think there was more than 5 minutes that she wasn’t held the first 6 months of her life. JWhen Scarlett was 4 ½ months old, she had her first surgery. It was an open heart surgery to repair the hole between her ventricles and to make her pulmonary valve more functional. The surgery went well. She had pink toes for the first time! We went home 5 days later with a pretty pink baby. 6 weeks after her surgery, we were able to let her cry it out for the first time. I cried it out too. Not because she was upset, but because she was strong enough to be able to work those lungs!
Scarlett is 2 ½ now (as of January 2010) and has had two procedures since her first surgery. The first was a cath procedure around her 1st birthday to try to balloon open her left pulmonary artery. It didn’t work, but she was still too small to risk a more permanent solution. Over this past summer, just before her 2nd birthday, she had a second cath procedure. This time they placed a stent in her pulmonary artery to keep it open. She will have to go back at least every 2 years to have it adjusted for her growth. This coming year, Scarlett may have her second open-heart surgery. We were warned after the first one that 50% of children who have her surgery have to have a second one to remove scar tissue from around the original surgery site. Scar tissue is building up and starting to put too much pressure on her heart and lungs, so they will have to open her up and take care of it. It’s super scary, but we have great doctors and a wonderful support system. Around the time Scarlett hits puberty, she will have to have a valve replacement surgery. Hopefully, that won’t be an open heart surgery by the time that one rolls around.
Aside from these trials, Scarlett is a normal 2 1/2 year old girl. She likes to play tea party and dress up. She knows her colors, numbers, shapes and letters. She starting to learn to read. She just recently started running and she can't jump yet, but she'll figure that out soon enough. She's happy and loving and independent. She'll be just fine.
