Emma is our sweetheart with Down syndrome, Autism, and mild cerebral palsy. She lived in a Ukrainian orphanage for 5 years after being given up at birth-- simply because she had Down syndrome. Emma was 5 years old when she came to our home and she weighed only 17 lbs at that time. She had the same heart defect as our biological daughter, Brianna, had, and because of that defect, we were told in April 2008 that Emma would not be a candidate for surgery due to the pressures in her lungs being so high. There was very little chance that she could survive the surgery.
Here's the blog post that I wrote on April 11, 2008 about our sweet Emma. Looking back, I can still feel that raw emotion, but also the spark of HOPE. On August 4, 2008, Emma had her life saving surgery and on August 8th she came home from the hospital! Our little miracle girl. Here's a little post from the past about our Emma...
From April 11, 2008
That little face deserves a second chance... and even a third! The cardiology appointment went much as we expected yesterday. Our local cardio agrees with the one that did the cath and says that the surgery could likely be fatal for Emma. She said she sees the things that were discussed with us and agrees with all the findings. She then stopped and LOOKED at Emma. Didn't examine, didn't feel, didn't do anything medical. She just LOOKED. And Emma was sitting up on my lap looking right back. Then she started to talk. And it wasn't about her heart. She said that the little girl we brought in there a month ago was spacey. She didn't flinch at the doctor's touch or react much to anything. Then the cardio leaned forward and Emma followed her in with her eyes. They met. Our cardio is of Indian (India-Indian) heritage and has been doing this for 30 years. She has a lot of experience and is good at what she does. She sees past the condition and sees the child. Next she looked at me and said that God saved this child. Emma's been through so much already and deserves a chance. Let's talk about what happens if she doesn't have the repair. She went on to describe the process of dying that would transpire. I won't go into detail here but it wasn't a pleasant picture. No picture of death is pretty, but still... Our cardiologist has known us for 2 years now. She's walked us through pre-op and post-op with Brianna. She encouraged our needs and wants, she advised us, and she treated Brianna well. Now she was looking at me and telling me the sweet things that many who have followed Emma's journey have said- she's a miracle, she's a blessing, let's get her fixed. Although the risks related to the surgery are VERY high, there is no 'risk' in the alternative. It is definitely an ending, a painful and long one that will begin soon. If Emma is that small percent, if her strong will and God's hand pull her through, she can have a long, happy, healthy life. We will meet with the surgeon during his next clinic in Orlando. He's the hand that held Brianna's heart. We'll hear his opinion before we go any further. I don't know what we will do after that. So much depends on each doctor's input and outlook on her prognosis. But we continue to stand on the HOPE that He gives us. Not only that the surgery will happen and be a success, but that God's grace will surround us and will protect Emma no matter what decision is ultimately made for her. Pray for our girl, pray for Mike and I as we continue to search through everything and know the way God is leading for Emma.