Adriel’s Heart Journey

On October 14, 2023 our sweet boy Adriel Sebastian was born at St. Joseph’s Hospital in Phoenix, AZ. What seemed to be a normal, healthy pregnancy was all changed at 20 weeks pregnant. It was then that we learned our baby boy had a congenital heart defect called Tetralogy of Fallot (TOF). We were then referred to a high-risk maternal fetal medicine doctor and a fetal cardiologist. It was then confirmed that our baby did have TOF and Pulmonary Atresia (the valve that controls blood flow from the heart to the lungs did not form at all).

Congenital Heart Defects are problems with the heart's structure that are present at birth. According to the CDC, congenital heart defects (CHDs) affect nearly 1% of births per year; of those babies, about 25% have a critical CHD. Infants with critical CHDs generally need surgery or other procedures within their first year of life. Adriel’s specific CHD, Tetralogy of Fallot (TOF), is estimated to affect approximately 1660 babies in the United States; or 1 in 2518 babies born in the US each year. TOF is the most common of the critical CHDs and is a combination of four defects. 

1. Pulmonary stenosis.

2. A large ventricular septal defect. 

3. An overriding aorta. With this defect, the aorta is located between the left and right ventricles, directly over the ventricular septal defect. As a result, oxygen-poor blood from the right ventricle can flow directly into the aorta instead of into the pulmonary artery.

4. Right ventricular hypertrophy. In this case, the muscle of the right ventricle is thicker than usual because it has to work harder than normal.  

At 34 weeks pregnant after going for an ultrasound and other tests at Yuma Regional Medical Center, doctors thought baby was going to be born right there as I was having contractions and was then air lifted to Phoenix where I spent the night at the hospital and was then discharged and was told to stay in town for the remainder of my pregnancy.

When Adriel was born, at 37 weeks, I was only able to see him for a few seconds before he was rushed to the Neonatal Intensive Care Unit. I was not able to see him for about 4 hours and did not get to hold him while he was at the NICU as he was so fragile and had wires all over his body.

On October 17, at 3 days old, Adriel was transported by ambulance to the Cardiovascular Intensive Care Unit (CVICU) at Phoenix Children’s Hospital. The following day they sedated Adriel and did a CT scan to take a look at his heart. When they brought him back to the room, Adriel’s heart rate dropped really low and everyone came rushing into the room, watching everything and not knowing what was going on was really scary, luckily they were able to stabilize him. On October 26, Adriel was taken to the Catheterization Lab where he was once again sedated and doctors placed two stents into his PDA to keep it open (it usually closes within a few days after birth) in order to improve his oxygenation and allow blood flow into his lungs. In order to do this procedure on him, he had to be intubated, the breathing tube was able to come off within the next two days after the procedure. After that his oxygen levels looked really good and he stopped needing supplemental oxygen. Within the next couple of days after the procedure many of the intravenous and arterial lines were removed and supplemental nutrition was stopped. On November 9, Adriel was discharged without needing oxygen or a feeding tube. According to the medical team only 1% of children in their unit go home without oxygen support and/or a feeding tube.

Unfortunately, the stents are not a permanent fix. When Adriel is between 4-6 months, doctors will be performing an Open Heart Surgery, which will last between 6 to 8 hours, to do a full repair of his heart. If everything goes well we are expecting to be in the Cardiovascular ICU for about 2 weeks. Anticipated recovery post surgery is approximately two months. I am hopeful that after this we will finally be able to take our baby boy home.

We love taking care of our Heart Warrior but there is definitely a lot that goes into having a Heart Baby. Adriel has many follow up visits in addition to his normal pediatric appointments. Each week there's either a follow up appointment, cardiology, physical therapy, occupational therapy, feeding therapy or some other specialty appointment; some days there are more than one. Christian and I have taken time off from work to be able to care for our baby. Unfortunately our time off has come to an end, Christian went back home to work and I had to resign from my job to be able to stay in Phoenix with Adriel. We’ve been surviving on one income as I have not received any paychecks since I left for maternity leave back in September. We are so grateful with our family members who have helped us with providing us with a roof when we first arrived to Phoenix and with the monetary donations we have received from our family as well. We are also thankful with the Ronald McDonald House Charities for providing us with a “home” away from home and for allowing us to stay close to the hospital in case of an emergency. We decided to setup this page to help support some of the financial needs we have due to our current situation. Whatever we are able to get will be used to pay medical expenses as well as travel expenses for my husband to be able to come visit us. I wish I could provide financial support for my husband during this time, but unfortunately that is not feasible at the moment. Thank you in advance for all the love, support for our sweet boy and for taking the time to read our story. Please keep our boy and our family in your prayers.

Adriel at 3 days old

Adriel now at almost 3 months old