MIGHTY Little MAYA

Mighty Little Maya

The day we found out we were having our twins, Stella and Maya, our hearts were filled with so much joy, excitement, and pride mixed with a little shock and surprise. We first learned of Maya’s rare and fatal combination of congenital heart defects at our 20 week anatomy scan. We were steamrolled with grief and fear.

We have been living between the parallels of enormous grief and enormous joy since that day.

In the beginning

At 26 weeks of pregnancy we moved all of our prenatal care to Children’s Hospital and prepared to deliver at Children’s as well to give Maya the best chance of survival. Stella and Maya were born full term at 6 pounds for Stella and 5 pounds for mighty little Maya. Three days later we returned home as a party of three. Maya had to stay behind in the cardiac ICU and 6 months later she is still there. She’s never been to our home that is filled with two of everything for the twins. One or both of us have been with Maya every day in the hospital since her birth advocating for her and loving and comforting her- just being her moms.

We had to sell (what we thought was) our forever home in the mountains and move to the city to be close to the hospital for Maya.

Initially, we believed Maya would be a candidate for palliative surgery on her heart. We believed she would have a couple of weeks in the hospital or a couple of months at most. However, once born, a defect to a valve in her heart makes her unable to receive palliative surgical intervention. Her condition is so critical and stability is so volatile that she is unable to leave the hospital. Her only real option is a heart transplant.

Twin Power

Maya and Stella share an undeniable twin connection. We all spend time together in Maya’s hospital room. The girls listen to music together, we sing, and we read books. Maya LOVES the music from Frozen and Encanto. Stella coos to Maya in the softest sweetest voice.

Maya came out of the womb with a determined scowl and eyes that seemed to be so focused and piercing even from her first day earthside. She has found her smile and giggle recently and melts hearts with that grin on her good days. On her bad days, her pink cheeks are gray and her limbs feel cold.

Mighty Maya’s Diagnosis

Maya’s heart has truncus arteriosus, a dysfunctional truncal valve, and she has a hypoplastic right ventricle, which basically means she has half of a heart. 1 in 100 babies are born with a congenital heart defect but Maya’s combination of defects is rare and complicated.

Due to her heart working so hard, it is now enlarged. Her heart puts pressure on her lungs making it hard for her to breathe. The architecture of her heart causes blood to flood her lungs. So far, she has received one surgery that had not been previously performed at Children’s Colorado. The surgery placed a special type of flow restrictor in her pulmonary arteries to protect her lungs.

The Wait

We have been waiting for a transplant for over 5 months. The longer we wait the more volatile Maya’s stability gets. There is no guarantee she will survive the wait for a new heart. We can only do our best to stay hopeful that we will get the call for her new heart soon. In the meantime, we want to be able to care for Maya as best we can.

Our Work & Worries

I am able to work remotely but Lea is a teacher in a classroom and remote is not an option for her. We both work for school districts and are not offered paid family leave. We have to quarantine as much as possible, even from friends and family. We cannot pass an illness to Maya. A cold could be fatal for her and if she did receive a heart and tested positive for a virus she would be ineligible to go through with the surgery and would have to continue to wait.

How Donations Will Help Our Family

We started this GoFund Me to raise $45,000 to help with medical-related expenses, and to help support us as one of us will need to temporarily step away from work to care for little Maya pre-transplant. We will both take unpaid family leave to care for her and Stella post transplant. Our living expenses will still exist and the funds raised will also help us keep our home, keep food on the table, and take care of some medical expenses. We want to spend as much time together, as a family, with Maya and Stella. We don’t know what Maya’s future will look like but right now she is here and we want to create memories even if they are in an ICU room.

From the bottom of our hearts we humbly ask that you share this link with friends and family and if possible in giving (any amount will help).