Evie Rose's Heart Journey

My husband and I went in for a normal scan at 18 weeks which every baby gets between 18-20 weeks. We were so excited to see our little girl, but we left with worry and sadness. After NIPT, genetics testing and 4 scans later with cardio and maternal fetal we found out not only did our baby test positive for down syndrome she has a heart defect, a duodenal obstruction, and a possible omphalocele. Her congenital heart defects are called Posterior Malaignment Ventricular Septal Defect and she has an Interrupted Aortic Arch. Basically an Interrupted aortic arch is a rare condition where your aorta doesn't form correctly, preventing blood from flowing throughout your baby's body. The aorta is a large blood vessel that carries blood from the infant's heart to the rest of its body.The VSD is a medium sized hole in the middle of her heart that will need to be repaired. The doctors told us this heart surgery will need to be done her first week of life. The duodenal obstruction will need to be fixed before she leaves the NICU. They basically go into her intestines cut out the obstruction and sew it back together. It can cause problems with her eating. Her hernia will be fixed at birth. We we're recently referred to Childrens Hospital of Philadelphia because none of the local hospitals in our area can perform the surgeries she needs. They said they would be able to do all of her surgeries at CHOP. They have to reconstruct her whole aortic vessel. If the surgery is successful, she will have to have a couple more surgeries when she is older. My due date is September 10 but unfortunately my husband and I need to relocate 2 hours and 45 minutes to Philadelphia at 36 weeks incase I go into early labor. We will both have to take an unpaid medical leave for atleast 8 weeks maybe more. While many things are still being discussed and a plan of action is still in the works medical bills and added expenses have already started to roll in. We have been and will be faced with medical expenses for specialist copays, deductibles, maximum out of pocket costs. We are pursuing and researching assistance (such as Ronald McDonald) but none of the assistance is currently guaranteed. Donations from friends and family will also help ease the stress of our daily expenses during prolonged time off from work while we go to the appointments and care for our sweet love when she arrives. We are putting our faith and hope into these wonderful and talented doctors that they will give our daughter the best chance of survival. We pray she will be able to live as normal as a life as possible even facing the obstacles she has before her. The next five months are going to be scary to say the least but we are all firm believers in God and the support of family and friends that we can and will get through this! #evieroseheartjourney