Karalyn Elise Smith
12.5 weeks into our third pregnancy, I started bleeding. Fearing I was in the process of miscarrying, I went in the same day for an ultrasound to find out what was going on. When I heard the heart beating, I was overwhelmed with relief. My relief turned quickly into weeping when I was shown through the ultrasound that things were actually not OK with our unborn child. We saw that our unborn child had a cystic hygroma (a fluid-filled sac running from her neck down her back) and severe hydrops (fluid under the skin). They suspected our unborn child had Turner Syndrome, in which case only 1% of these babies make it to birth. We had a non-invasive blood test done on me that could check for a few major chromosome disorders. This test came back negative for Turner Syndrome, but they were still very reluctant due to all the fluid our baby was retaining. They said to prepare for a miscarriage. How do you prepare for something like that? But, the days and weeks kept passing, and I was still pregnant!
At around 20 weeks, we had a level 2 ultrasound showing the hydrops had resolved, and the cystic hygroma was getting smaller. An echo of her heart showed her left side was underdeveloped and not pumping as it should.She had a critical congenital heart defect (CCHD) called Hypoplastic Left Heart Syndrome (HLHS). She also had an intact atrial septum, which paired with HLHS is a very serious, complicated and deadly combination. She would be facing an immediate procedure at birth, open heart surgery within days of her birth, another open heart surgery at around 6 months old and another open heart surgery between 18 months and 3 years of age. And this would be the minimum procedures/surgeries needed to give her a chance at life. And this wasn’t going to fix her heart, it was only going to re-plumb her heart to better support her blood flow. There is no cure for congenital heart defects. A heart transplant would be a real possibility in our daughter’s future.
With this news, we found out our daughter qualified for a rare in-utero heart surgery to open up her atrial septum which would allow the blood to better circulate in her heart in hopes of keeping the blood from pooling in her lungs. If the blood backed up and pooled in her lungs, her lungs would not develop properly (and we could tell through her echocardiagrams that blood was for sure pooling in her lungs). Your lungs have to be working well to qualify for the open heart surgeries. At this time, we had to have an amnio done for the fetal intervention, and we found out she actually did have Turner Syndrome (she was missing one of her X chromosomes, which was most likely the root cause of all her heart defects and other issues). We went to University of Michigan Motts Children’s Hospital and had a rare in-utero heart surgery done on our unborn daughter on July 16, 2013. With all the odds she had stacked against her and through lots of prayer, we decided to proceedwith the procedure to give her every shot at life that we could. She did great, and it was labeled a success. We left with high hopes.
Our world came crashing down when we went into labor four days later and delivered our little Karalyn Elise Smith on July 21, 2013, at only 31w2d gestation (we thought we were in the clear as you usually go into labor right away after a procedure like this). She was 4lbs 6 oz. Her heart was beating. The doctors tried everything to open up her lungs at birth, but she never took a breath. I could feel her heart beating against my chest as I held her after they told me there was nothing more they could do. Her lungs had not developed properly due to her CHDs; her lungs were too sick. She never opened her eyes; she never moved. She slipped into the arms of Jesus an hour after birth.
Since then, we have been working through the grieving process. We fought as hard as we knew how for Karalyn, and we know she fought as hard as she could, too. She overcame so much just in the womb, and we are so proud of the fighter she was. I am so PROUD to be her mom, to be a heart mom. She is my joy, not my sorrow. My eyes have been opened to a world I never knew existed before hearing the words “congenital heart defect,” and I will never be the same, nor do I want to be! My daughter changed my life for the better even though my heart is broken. Her light will continue to shine in this world as she sits at the feet of Jesus, and I can hardly imagine the day I walk into eternity and see my Karalyn running towards me as I take her into my arms, to see her eyes for the first time, to hear her voice for the first time. And to collapse into the arms of my Savior, the One who is carrying me through the immense pain and heartache of this world.