Elise…
When Megan was a child, she received a doll for Christmas. She named her doll, Elise. Now Megan is a married mother of two and named her baby girl, Elise. Elise is my hero…

Please read her story told by her beautiful, amazing and brave mother:

We found out we were pregnant with her very early on; it was mid July. We went for our 12 week ultrasound and honestly I only thought of it as an excuse to get to see our baby via ultrasound; neither one of us ever imagined that our lives would be turned completely upside down on that day and just what kind of a crazy ride our family was in for. I will never ever forget that ultrasound; there was a big bubble behind Elise’s neck and I asked the ultrasound tech if that was normal. She just sat there silently for a minute and then said the doctor would talk to us about everything. I knew something was wrong, and sure enough the doctor came in and started talking to us about chromosome anomalies such as Down Syndrome and other trisomies. We were terrified. They offered us a test called MaterniT21 that screened for trisomies and we had to wait a full two weeks for the results. We received a call back from the genetic counselor at st alphonsus maternal fetal medicine saying that our baby screened negative for all trisomies and that the test also determined it was a girl. We were over the moon and so relieved. I remember going out that very day and buying a whole bunch of baby girl clothes. I felt like I was on a cloud for about two more weeks until the next ultrasound. It was then that the doctor noticed a cyst in Elise’s brain which made her suspect a condition called Dandy Walker syndrome which ranges from mild to severe and impacts motor skill development. It was because of this new development that the genetic counselor decided to contact MaterniT21 and they then shared with her that although Elise screened negative for trisomies, they did notice what appeared to be a loss of material on chromosome 9 and a gain of material on chromosome 3. When I told my parents about this, my mom told me about a condition that apparently had been running in our family line for many years (which I had no idea about). I was shocked. It was because of this new information that we decided to have an amniocentesis to determine for certain whether Elise had unbalanced chromosomes as suspected. We waited another week and a half for those results, and I’ll never forget how my heart felt when I heard the genetic counselor tell me that my baby did indeed have unbalanced chromosomes…it was like whatever it was that suspended my heart was severed and it was free falling in my chest. It didn’t feel real. I remember those many nights waiting for test results…how hard I cried, and how I begged God to spare us of this. I also remember the several weeks after receiving confirmation of her diagnosis…I remember waking up in the morning, realizing that the hell I had been going through, the hell of the reality of our baby’s condition was not just a nightmare, but was real life. It felt like a nightmare in reverse…When you have a nightmare and then wake up to reality and are so relieved it isn’t true…I never wanted to wake up, because every time I woke up I had to leave the world of dreams where reality wasn’t true and get my body out of bed and re-live another day of this nightmare. I was convinced she wouldn’t live. I grieved for her, for that “healthy”, “normal” baby I was “supposed” to have. The doctors offered us termination more than once; each time we said absolutely no. This baby was ours, and regardless of her condition, she was already so fiercely loved. Nothing could make us not want her. So we held on. From what I’d heard from my mom and aunt, there had been many miscarriages in our family line, several stillbirths, and one baby born alive who all had this same unbalanced translocation of chromosomes 3 and 9. The one baby born alive lived for only two hours. She had a three chamber heart, and her spine was outside her body. Every new ultrasound for Elise, however, seemed to prove just what a tremendous miracle she really is. She did indeed have a mild variant of Dandy Walker (confirmed by in-utero MRI), and a missing corpus callosum, but other than that the ultrasound doctor was not able to see anything that would prevent her from living. However, there is a lot about her condition that they were not able to determine from ultrasounds, such as her brain function, underdeveloped airways, and cleft palate. Because she has an underdeveloped airway and no gag reflex, any episodes of acid reflux or throwing up could be the end for her. She also has periods of time where she simply stops breathing; I don’t know if it is her airways closing or a neurological issue. She just gets red in the face and nods her head back and forth like she is trying to breathe but can’t. Then suddenly she’ll gasp for air. The doctors also said that her body is retaining carbon dioxide because she cannot breathe properly. I can’t imagine not being able to breathe my whole life; it must be absolutely miserable. But she is a fighter. And we truly do believe this sweet girl is a miracle straight from the hands of God. Yes, she is not well, and yes, we only get to keep her for a short time. But the fact that her little heart is strong and her body is as intact as it is is truly a miracle. The fact that I didn’t even know if she would be born alive and now I get to hold her and kiss her any time I want…that’s a miracle. The fact that God has taken what so far has proven to be impossible (life with this condition) and made it possible…that is a miracle. We are so grateful to have her. Every day, every snuggle, every kiss is precious, because we just don’t know which day, snuggle, or kiss will be our last with her. She is so very loved, so absolutely cherished. I think back now on those nights I spent sobbing and begging God to let my baby “be okay”. She *is* okay. She is in His hands, and every day I thank Him for the time He is allowing us to have with her. She is exactly the person she was meant to be, and although I hate that she is not well, I love the fact that she is Elise, my one of a kind, designer-genes rockin’ precious baby girl, and I wouldn’t trade her or change her for anything in the world. How much she has taught us…how much she will continue to teach us. Thank you Kam for capturing images of this incredible little daughter of the Lord. Thank you for encapsulating these precious moments in beautiful photos that we will be able to look at many years from now and remember this beautiful soul who has brought us so much joy.