Support Aria's Family Enduring a Tragic Loss of an Angel

UPDATE: Aria sadly passed away on February 19th, 2025 at 26 days old. All donations will be used towards her funeral and to support the family during the devastating loss of this beautiful soul. As always, prayers are more than appreciated! Thank you for your love, kindness, generosity, and continued support.

My nephew Jordan and his girlfriend Ashley experienced a life-changing event when their baby girl Aria Grace arrived on January 24th, 2025. Please read the explanation from the mother! I am so proud of their faith in deciding to go full term with all the unknowns ahead of them.

As a first-time mom, I was thrilled beyond belief to find out I was pregnant, finally after many years of trying. The entire pregnancy has been going great, and Jordan and I were so excited finding out about our little girl and going into her 20-week anatomy scan to hear how wonderful she was looking or so we had hoped. It was then that we found out about her diagnosis and that day changed our lives forever. And so began the many doctor’s appointments, cardiology appointments, ultrasounds, follow-ups, meetings, and discussions that we were absolutely unprepared for, as well as the never-ending medical bills.

Our sweet girl is approximately 1 out of every 3,955 babies in the United States that are born with HLHS. This translates to about 929 babies each year. She is our 1 in 100 babies that will be born with a congenital heart defect, but we know she will be our strong fighter and heart warrior.

Hypoplastic Left Heart Syndrome (HLHS) is a rare congenital heart defect where the left side of the heart is underdeveloped. This includes the mitral valve, left ventricle, aortic valve, and aorta. In a normal heart, the left side pumps oxygenated blood to the rest of the body. However, in babies with HLHS, the left side cannot effectively support circulation, leading to severe complications. Every HLHS case and baby are different, and we are hoping and praying that Aria’s first of three surgeries will go smoothly and that her recovery will be just as such.

The first surgery is called the Norwood procedure and occurs within several days of birth. The purpose of this operation is to ensure that blood-flow is controlled enough to prevent damage to the heart and lungs, and that enough blood is reaching the lungs to keep Aria alive until the second operation. 

The second surgery is called the Glenn operation and occurs 5-7 months of life. During this surgery the superior vena cava — a large vein that carries deoxygenated blood from the upper body into the heart — is disconnected from the heart and attached to the pulmonary artery. After this operation, deoxygenated blood from the upper body goes to the lungs without passing through the heart.

The third surgery is called the Fontan procedure and occurs at approximately 4 to 5 years of life. During this surgery the inferior vena cava, a large vein that carries deoxygenated blood from the lower body into the heart, is disconnected from the heart and attached to the pulmonary artery. After this operation, all the deoxygenated blood from the body goes to the lungs without passing through the heart.

After each of these procedures, the post-op recovery process is estimated to be about three months long, could be less or more depending on any further complications that may arise.

Aria will also need a customized series of diagnostic tests between the planned stages of surgery, and throughout childhood as well as multiple appointments to see her primary care provider and cardiologist. Additional surgical or catheter therapies, or in rare cases heart transplantation, may also be recommended later in life or as early as 3 years old if the surgeries cause her heart to fail.

Jordan is a federal employee at the United States Postal Service, and I am a NYS employee with Monroe2Boces as a registered nurse, both jobs unfortunately do not offer any maternity/paternity leave. Both jobs denied us from applying for paid family leave through NYS due to being a public organization. All of our time off from work will be unpaid.

As we are unsure of Aria’s length of stay in the hospital after the surgeries, we are mentally, emotionally, and financially scared of all our futures. When it comes time for us to be there for her during her second and third surgeries and other medical appointments in between, this will be unpaid time off as well. As any parent can understand I would not want to leave my daughter in the hospital alone without my supervision, love, support, and to give her a voice that can advocate for her during recovery. I am very fortunate for my knowledge and background in nursing and want to be there for her as much as I possibly can.

We will be posting updates of her surgeries and recovery. We are in no position to turn down any form of assistance at this point, which is why we are starting this fundraiser. Any donation will help, and we will be so honored and grateful for people to help us fight for our daughter, she is already so loved, and we just want her to have the best chance to grow up and live a beautiful life. I know that was a lot to read and to take in, and I really appreciate every single one of you who did. It means the world to Jordan and me, and we are so fortunate and blessed to have wonderful family, friends, and support systems as well as our church. We cannot thank you all enough for any amount of donations and your generosity during this time. Everything helps, including your prayers, please continue to pray for our little girl and family, God bless!

With so much love, Ashley Capaldo & Jordan Silfies