Facing the Toughest Choice for Our Baby with HLHS

Facing the Toughest Choice for Our Baby with HLHS

Update:

We are devastated to share that our sweet babygirl, Sophia Ximena Cuevas, has already passed away. There are no words big enough to explain the pain we feel or how broken our hearts are. This has been the hardest and saddest time of our lives, and we are still trying to figure out how to move through this grief.

We want to thank every single person who has donated, shared, or sent us love. Because of your support, we were able to give Sophia the goodbye she deserved. We were able to have her cremated, place her in a beautiful memorial case, and make sure she will always be with us. Your help also gave Adolfo the chance to take time off work so he could be by my side, and so we could face this unbearable loss together as a family.

We are shattered, but we are also so deeply grateful. Thank you for helping us honor our daughter. Sophia will always be loved, remembered, and missed beyond measure. ♥️

Our unborn baby girl has been diagnosed with Hypoplastic Left Heart Syndrome (HLHS)—she is missing more than half of her heart, along with a defect in her aorta and the top side of her right chamber. She is supposed to be our rainbow baby, due on Christmas Day, and this is the hardest thing we’ve ever faced. We’re asking for help so we can focus on loving her and being there for our family through whatever comes.

We never imagined we would be writing something like this, but our family is facing one of the hardest moments of our lives. At our 20-week anatomy scan, we got the worst call we could have received: something was wrong with our baby’s heart. After more testing, it was confirmed that our unborn baby girl has Hypoplastic Left Heart Syndrome (HLHS)—she is missing more than half of her heart. She also has a defect in her aorta and in the top side of her right chamber.

This pregnancy has already been such a difficult journey. I have severe hyperemesis gravidarum, which has led to hospitalization for weeks at a time and the placement of a PICC line to receive TPN, a nutrition line, so both I and the baby could get the nutrients needed to survive. I’ve needed an at-home nurse, my partner has taken so much time off work, and my mom has been here every day to help care for our toddler. We are at the hospital multiple times a week for appointments. Because of these complications, this will be our last baby, making this journey even more emotional and difficult for our family.

She is our rainbow baby, and her due date is Christmas Day. What should be a season of hope and joy has turned into the most painful and uncertain time of our lives. We are now being transferred to a pediatric cardiologist and a maternal-fetal medicine specialist (NST doctor) to discuss the possible outcomes and prepare for the decisions we may face.

Right now, we don’t know what the future holds—whether our baby will face a long journey of open-heart surgeries and hospital stays, or if we’ll be preparing for the heartbreaking possibility of saying goodbye too soon. Either way, our lives have been forever changed, and we know we’ll need support to make it through.

We are reaching out because the costs—financial, emotional, and physical—are more than we can carry alone. Any help we receive will go toward:

• Covering childcare for our older child while we’re in the hospital or during appointments.

• Allowing us to take time off work so we can focus on our baby and each other.

• Helping with medical, travel, and if the unthinkable happens, funeral or cremation costs.

This is the most vulnerable we’ve ever felt, and it’s not easy to ask for help—but we know we can’t do this alone. Whether it’s through a donation, sharing this page, or keeping us in your thoughts and prayers, we are so grateful.

No matter what the future holds, our baby girl is already deeply loved, and every moment we have with her will be cherished forever.

Thank you for walking with us through this painful and uncertain journey. Your love and support mean more than words can ever express.