Why a blog?
We have decided to start this blog as a way to share Eden’s story, to update those walking alongside us, and as an outlet for us to bring awareness to the reality of carrying a child with a life-limiting diagnosis. This path we’re on is one we could have never imagined and would have never chosen, but it has already strengthened our faith in Christ immensely and we know it will continue to do so. We would love to record and share all that He is doing through this trial. We also simply want to celebrate and honor her life even as she is in the womb, because no matter her diagnosis she is still our child that The Lord has entrusted to us. We know that God is knitting Eden together in Amber’s womb just as she is meant to be (Psalms 139:13) and that she is a heritage from Him (Psalms 127:3). And no matter how short her life ends up being, He has plans for her. We believe that prayer is powerful, and we would be so grateful if others joined us in praying for our baby girl.
What is Eden’s Diagnosis?
Eden has not “officially” been diagnosed with her condition due to our decision to not go through with an amniocentesis. However, through bloodwork and monitoring through ultrasound, the doctors are confident enough with that information alone that she has Trisomy 18. The NIPT bloodwork we had done returned results that she is 91% high-risk for the condition. And through ultrasound, they found that she has a VSD (ventricular septal defect) in her heart along with issues with her pulmonary artery & aorta, a choroid plexus cyst on her brain, and clenched fists that they have not seen open. These results are typical for babies with this condition. So, considering the findings & bloodwork, we are continuing with this pregnancy as though this is her diagnosis.
What is Trisomy 18?
Trisomy 18, or Edwards’ Syndrome, is a condition that is caused by a random error in cell division. When this error occurs, a third copy of chromosome 18 is present instead of the normal two. This disrupts the normal pattern of development in significant ways that can be life-threatening, even before birth. There is no cause for Trisomy 18, and there is no cure.
Where do we go from here?
We are aware of the reality that these babies tend to have very short lives here on earth, however the doctors have no way of giving us a timeframe for our sweet Eden specifically. There is no way to say for certain how much time we have with her. So, we will continue to let her do her thing, and let God do His thing as He continues to give her life through Amber. We are going to make the most of every moment we have with her and continue to lift her up in prayer.