My Baby Had a Ventricular Septal Defect

Last updated on July 24th, 2023 at 11:39 am

Many babies have minor or major medical issues after birth and well into the first year of their lives. My son, twin A, underwent a major medical issue after his birth, despite having a great pregnancy with no detected complications. I went into labor at my 38th week and 5th day mark. I was in labor for 12 hours and ultimately had my twin sons by C-section. They were perfect – twin A was 5lbs 12oz and twin B was 6lbs 6oz. My husband and I were ecstatic that our identical sons Christian and Cameron were finally here.

During my stay at the hospital, the pediatrician on staff waited until my visitors left for the day to tell me he discovered a heart murmur on my son Christian (twin A). Everything changed for me at that very moment. I prayed so hard for my son that night. I wanted my sons to spend every moment with me during our hospital stay. The next business day the pediatric cardiologist in the hospital examined my son. Christian was diagnosed with Ventricular Septal Defect, which is commonly referred to as VSD. VSD is a defect in the septum between the right and left ventricle. The septum is a wall that separates the heart’s left and right sides. Septal defects are sometimes called a “hole” in the heart and our son had 3 holes in his heart.

It was devastating to watch his health compromised. He breathed faster and harder than normal in comparison to his twin brother Cameron. He had trouble feeding and was not growing like his twin brother. You could see his chest cavity cave as we fed him. After numerous doctors visits my husband and I elected to have the surgery performed on our son. It was not an easy decision. The surgeon asked that we try to get Christian’s weight to 10lbs from 6lbs in a month. Mission impossible! We were able to get him to 8lbs and the surgeon was confident to perform my sons’ open-heart surgery on our son who just turned 2 months old.

We prayed for God’s will to be done. Of course, we wanted our son to live but we could not bear to see him struggle with the basic life skills like breathing and eating. Splitting our time to take Christian to his numerous doctor visits and pre-surgical testing and trying to balance spending quality time with Cameron was a tug of war for us. However the decision was made and Christian’s surgery was a success! He stayed in the hospital for only 5 days – that was amazing! Thank you, God!

After going through the scariest time in our lives, my husband and I were faced with new challenges. Christian was meeting his milestones later than other children his age. His pediatrician told us he might experience some developmental delays so we adjusted our expectations. We noticed Christian did not maintain eye contact and he was not using expressive language much at all. It was a bit odd but we thought he’s a boy and boys develop slower than girls. So basically we were waiting for his “ah-ha!” moment. It came but not the way we had expected it to.

At the age of 3 it was recommended that we have both our sons evaluated. That was another excruciating, exhausting, and emotionally tugging experience we had to go through. There were several specialists who evaluated our sons from a psychologist, a representative from the board of special education, speech, and occupational therapists. After their reports were compiled, reviewed, and explained to me, I became so overwhelmed with emotion I could no longer stand it and asked them to stop. Can you imagine being given multiple pages of data saying your children are behind in their academic, communicative language, social and emotional skill set in comparison to other children their age? I just wept and wept. It felt like I was grieving for them because I knew the road for learning was going to be challenging and I thought, “What could I have done differently to change this?” They were classified with Speech and Language Delay.

My husband and I had to learn to accept our sons for who THEY are and learned how to set achievement bars THEY can aim for. There cannot be any ambiguity when instructing our sons. We learned how to shift our focus from what they can’t do to what they can do. Once we accepted their challenges our motto became, “In lieu of taking the direct interstate to learning, we prefer taking the scenic route”.

Christian and Cameron are now 6 years old and they have made tremendous progress. Every 3 years a triennial evaluation is conducted where the child is re-evaluated. As a result of my sons’ triennial evaluation, there were some mild to significant achievement gaps. Their new classification is Autism. This year they successfully completed 1^st grade and were promoted to the 2^nd grade but my husband and I agreed to retain them in the 1^st grade. We felt that academic gap ranges were too broad especially for the new Common Core Curriculum Standards that the Board of Education has implemented in our state. Besides, we know they are not ready. It’s plain and simple. For example, Christian can read books on a second grade level but his comprehension is on a Kindergarten level.

Since their births we are our sons’ biggest advocates, making sure they are given the most appropriate and available services. With twins this is no easy walk in the park to stay on top of specialist doctor visits, communication with school staff and administration, working full time, and being a wife. Organization is a must for me in order to maintain some kind of balance. We all have peaks and valleys, but we go through it together with unwavering love.

My name is Schaneick Thomas and I’m the founder of ManyBabies. I’ve been married to my wonderful husband Rickey for 8 years and we are the parents to twin 6-year-old boys. I’ve worked in the Insurance industry over 18 years. I recently obtained my Masters Degree in Curriculum and Instruction in 2010. When I became a parent to multiples with special needs, it changed my career path and life dramatically. I wanted to share the unique joys and challenges of raising multiples, and create a platform to exchange resources and advice from other parents of multiples. From this desire, the concept and mission of ManyBabies was established. Visit us on Facebook and Twitter.

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