Did you know that 1 out of every 110 births are born with a congenital heart defect? 1 out of 4 of them will need surgery. 50% of babies with Down syndrome are born with congenital heart defects. The numbers are staggering yet there seems to be little known what causes congenital heart disease and how to prevent it. They do know that measles, certain medications such as statins, ACE inhibitors, acne meds and a few others, alcohol, smoking, and genetics such as Down syndrome and rare deletion chromosome syndromes, and family history can cause heart defects. It is really important to seek early prenatal care and discuss family history and medications.

As a mom, it was heartbreaking to discover I was having a baby with Down syndrome. I was fearful of the future and the struggles that my son might encounter as he grows into a young man. I was afraid of the what if’s, afraid of having never been around someone with an extra chromosome and what it would be like, and afraid of all the cruel people in this world. I loved my son the second I took the pregnancy test and it was positive. I wanted him for years. Nothing could change my love for him. Not Down syndrome (Trisomy 21) or Trisomy 13 or Trisomy 18, not a cleft palate, not anything abnormal that could have been discovered during pregnancy or once my child had been delivered such as autism, learning disability, or much more. That baby was mine and I would love him unconditionally!

When I was 24 weeks, I was told my ultrasound with my maternal fetal medicine doctor (high risk doctor) should no heart defects, but that he wanted me to go for an echocardiogram at our local Children’s Hospital. When I was being taken back for the scan I asked how long it would take for me to get the results from the scan and she told me my doctor would call me in the next couple of days. After the scan, the ultrasound technician told me she was going to take me to a room to meet with the cardiologist. It took everything in me to be brave and not cry. I knew it was bad news if I had to meet with the physician. I went by myself since the original ultrasound didn’t show anything. I was sure everything was fine. Oh, how I was wrong. It was there that I discovered that Oliver would be born with a heart condition called Tetralogy of Fallot. My heart broke into a million little pieces the second the doctor said those words.

Tetralogy of Fallot is a condition with four different heart defects. A hole in the ventricular septum, thickening in the right ventricle that decreases blood flow, and an overriding aorta.

We were so blessed with an amazing cardiologist and surgeon. Our goal was to make it to 6 months, but Oliver didn’t make it that long. His heart was struggling to keep up. His little heart needed repaired at 3 1/2 months. Not only did he have the 4 complications listed above, but he had another hole atrium. Babies are born with foramen ovale and patent duties arteriosus. Most babies close within a few day, but for Oliver’s did not close. During his open heart, they repaired 7 different things on his little baby heart.

I am thankful God gave us the technology and the people to care for my Oliver. I had so many different emotions and feelings, but I know God moved mountains for us to have everything happen at the right time with the right people. Especially, with my kids starting school at that time and building a house. My theme song was “Oceans” by Hillsong. There were so many times I felt alone and like I was drowning. But, I knew I was never alone. God is greater.

Peace be with you!