I was born March 22, 2006 at 1:32pm in Naperville, IL by cesarean section. I weighed 7 pounds, 12 ounces, and was 20 1/2 inches long. The picture above was my christening picture in the hospital before my shunt surgery (16 days old). I was born with a congenital heart defect called Tetralogy of Fallot, which is a congenital heart defect consisting of four different abnormalities.
Tetralogy of Fallot involves four heart defects:
- A large ventricular septal defect (VSD) – a hole in the septum between the heart’s two lower chambers
- Pulmonary stenosis – involves narrowing of the pulmonary valve and the passage from the right ventricle to the pulmonary artery
- Right ventricular hypertrophy – the muscle of the right ventricle is thicker than usual
- An overriding aorta – the aorta is located between the left and right ventricles, directly over the VSD. As a result, oxygen-poor blood from the right ventricle flows directly into the aorta instead of into the pulmonary artery
Before I was born, my Mommy and Daddy wanted desperately to have a baby. They went through a year of infertility treatments until it got to be too much for Mommy. One unexpected day after Mommy stopped treatments, she found out she was pregnant.
Mommy’s pregnancy was considered “high risk” because of her age. The obstetrician recommended a few tests to make sure all was okay with the pregnancy. Mommy had a Level 1 ultrasound which is also called a “screening ultrasound” to check that there is normal growth of the baby and to look at the location of the placenta and to be sure there is enough amniotic fluid. During the ultrasound the Perinatologist discovered a hole in my heart. He told mommy that there may be a possibility of Down Syndrome because of this, and asked if she wanted to have an amniocentesis to confirm.
Mommy didn’t know how to feel about all this information except scared and overwhelmed and she didn’t know how to tell Daddy. After Daddy and Mommy talked and determined that they were happy to be having a baby and whatever God blessed them with they would handle it with a loving and open heart, they decided against the amniocentesis, and just had my heart monitored over the next 5 months to see how it was growing.
Mommy did all the things that expectant moms do. Started buying clothes, got the nursery together, tried mommy yoga (that didn’t go over that well) and had a baby shower. She wasn’t going to let anything ruin the excitement she was feeling as an expectant mom, she had waited far too long to be a mommy.
And here I was blue, as was told to Mommy & Daddy by the Pediatric Cardiologist before I was born. Mommy was eagerly awaiting the scream, after a couple of seconds there it was. Daddy never told mommy until just recently that I wasn’t breathing when I came out.
I got to see Mommy for only a few seconds before they rushed me off to the NICU to evaluate me. After what seemed forever, the Neonatologist came to the recovery room to tell Mommy and Daddy of the heartbreaking news…I might have Down Syndrome, but it won’t be confirmed until the karotyping (test to identify and evaluate the size, shape, and number of chromosomes in a sample of body cells) blood test came back from the lab. However there were other characteristics that would give them an indication I had Down Syndrome. The Simian Crease on my left hand (The presence of a single transverse palmar crease can be, but is not always, a symptom associated with abnormal medical conditions, such as fetal alcohol syndrome, or with genetic chromosomal abnormalities, including Down syndrome (chromosome 21), and a large gap between the big toe and the toe next to it on both feet.
Mommy and Daddy were quiet they didn’t know how to react to the news. Mommy was thinking it was her fault because of her age and Daddy just didn’t say anything, except “I’m going to call everyone to tell them the news.” Then the nurse brought a picture of me to Mommy. Mommy’s eyes started tearing up, she could see it in my eyes that I had Down Syndrome. Her heart started breaking.
It seemed like forever since Mommy and Daddy saw me so they wheeled Mommy down to the NICU to see me. I was hooked up to monitors and had an air bubble over my head to help me breathe, but Mommy wanted to hold me.
Here is our pride and joy our baby boy!
People started to come visit me. Since we lived in another state people were flying in just to see me.
Here’s my Grammy holding me
Here is me with my Aunt Melinda
Here is me with my sister Amanda
Here I am with Aunt Tina
After two weeks in the NICU and several issues with my oxygen levels falling too low, I was transferred to another hospital were it would be determined if I would need surgery.
I had a Blalok-Taussig shunt put in at 16 days old to help with the flow of blood, so I could get stronger to have my complete heart surgery (open heart) when I was 6 months old.
Here is mommy spending time with me before my surgery. This is when I got christened.
Here I am after the surgery
My first wagon ride was a trip to the “step-down” unit while I awaited clearance to leave
Well finally 3 weeks and one day after I was born I was able to go home. My parents were so excited to get home and start living our lives as a family.
As I was getting stronger Mommy arranged for early intervention to start. I had a physical therapist come to my house to help me start to get stronger and help me to reach my milestones. I was scheduled to have my complete heart repair at 6 months old and they needed me to be strong to go through this major surgery.
Here I am with my physical therapist:
Mommy would sit in on my therapies with Darla the physical therapist to learn all that she could to help me get stronger and help me reach my milestones. This is mommy helping me to stand with the encouragement of my pray bear. She used the step stool since this would help me to learn to grab on to something and pull myself up. She was very creative in what she used to help me reach my goals.
You can read more about my first six months in my book “Jacob’s Journal – My Journey Home”.
Follow me and my growth as I am now almost 6 years old.
Marla Murasko - Special Needs Mommy Blogger, Advocate, Mompreneur, Author
I'm a proud Mom, Special Needs Mommy Blogger, passionate Health Activist, Parenting Mentor, Social media enthusiast, mompreneur & author. I am passionate about spreading awareness and acceptance for children with special needs, and to compel others to show compassion for their families who love them I advocate for other causes that are close to my heart. In this blog I give you a window into the beauty of Down Syndrome, celebrate my son's accomplishments and struggles, and share the joys of motherhood and our everyday lives as a typical family with a little something "extra". My son is truly my greatest gift. He has changed my life and has made me a better person. People like my son are making an impact on society one smile at a time!