EGL Genetics Blog

In Memory of Aaron — How You Changed Our Lives 

Posted by Danyella Davis on Mar 29, 2017 11:00:00 AM

Thank you to this month’s blog feature by Leah and David Bultema; David is the Executive Director and Founder of The AaronStrong Foundation.

Hope. Faith. Family. These three things Aaron photo.jpeghave been our focus and have strengthened tremendously through Aaron’s journey. Although we could've easily chosen a path leading to destruction following the loss of our son, we instead chose a path of recovery. That choice made one of the toughest times of our lives one of the greatest blessings.

When David and I found out we were expecting again we were surprised, but very excited. The thought of a third child was a little scary. While David was worrying about how he would handle a potential girl in the mix of all boys, I had other concerns. Throughout the first part of my pregnancy, I had an uneasy feeling that I couldn't explain, and chose not to express. After the initial eight-week ultrasound, the doctor gave us a due date that didn't match how far along I knew I was. This didn't help the sinking feeling I expereinced — something may not be right. I put what I classified as “negative thinking” into the back of my mind and tried my best to stay positive.

By 20 weeks, the baby was moving around like normal. Our boys, Maddux and Nolan (6 and 4), loved talking to the baby and feeling the response to their voices. Their excitement grew with each day. They couldn't wait to find out if it was going to be a boy or a girl. Family 2015.jpg

The Ultrasound Reveals More Than We Expected

David and I, along with my mother and our sons, went to the doctor for the routine ultrasound to find out the measurements and gender. Once the ultrasound was complete, we found out we were having another boy. David was pumped! After a few fist pumps and high fives shared between David and our boys, the technician explained something else the ultrasound revealed. Our newest son had choroid plexus cysts (CPC) on his brain, which is a soft marker for trisomy 18. Our hearts sank, and I immediately went back to that bad feeling I'd felt earlier in the pregnancy. We immediately met with the doctor and she explained the cysts further, as well as the details of trisomy 18. By the time we left, the doctor had assured us that CPC cysts were present in many cases and resolved themselves after a few more weeks with no further complications, including no trisomy 18. However, since the cysts were present, we were referred to specialists for further testing.

The Ebb and Flow of Emotions

The weeks ahead involved a roller coaster of emotions. The next ultrasound revealed that the cyst had, in fact, been resolved. The immediate relief was unexplainable. Unfortunately, it was not long-lived; that same ultrasound detected a potential heart defect. We went from high to low in a matter of seconds. The overwhelming thoughts of “what-if's?,” and “how were we going to handle this?” came flooding in. On the way home, that same day, we decided to name our son, Aaron. Our first two boys are named after baseball players, and we planned to do the same for Aaron. We were undecided about what name to choose until we read about Aaron Boone overcoming a heart defect. We knew our Aaron was a fighter and would also overcome whatever might be ahead. Trisomy 18 wasn't our immedicate concern. We were now focused on the many unknowns of potential heart issues.

David and I never had prenatal screenings with any of our pregnancies, because we knew nothing would change the course or the outcome, even if something negative was found. After discussing the results of the ultrasound with our doctor, her concern was less trisomy 18 and more trisomy 21, or Down syndrome, in which heart defects are also common. At that point in the pregnancy, we decided to go ahead and have the blood work done. We wanted to find out exactly what we might be dealing with in order to plan for the best care possible once Aaron arrived.

Aaron's Diagnosis 

While waiting on the results of the blood work, we met with a specialist in pediatric cardiology. We left the appointment ecstatic! The cardiologist told us that he did not see the abnormality. So, once again, we were very relieved. However, a few days later, we got a call with the results from the blood work informing us that it was, in fact, trisomy 18. Devastation cannot begin to describe that moment. I remember calling David and sobbing through the phone, telling him the results.

The remaining weeks of the pregnancy were filled with research, appointments, planning, and an abundance of prayers. We enjoyed every moment as a family talking to Aaron and feeling him move. Our initial goal for Aaron was to get to birth, and then do whatever we needed to do for him, based on his needs. The hardest part was planning for the unknown. There were so many possible outcomes; stillbirth, birth defects, potential surgeries, home health, and possible hospice care were just a few scenarios.

Our Precious Boy, Aaron

I began to have a lot of contractions and was admitted to Winnie Palmer. While I was there, we had an amniocentesis performed to get a final confirmation of Aaron’s diagnosis to help us finalize our birth plans. Trisomy 18 was confirmed. I felt a mixture of emotions. It was overwhelming. Aaron Footprints.jpgI wanted to hold Aaron, alive. I wanted God to take away everything that was wrong with Aaron.

At the same time, I did not want him to suffer. At 34 weeks, I did not feel Aaron moving, so we headed straight to the hospital. Although I already knew what happened, it was confirmed through an ultrasound that his heart stopped beating. He was still born on our second son’s birthday, December 11, 2013. Aaron was so precious, so perfect, and looked so much like his brothers. We were able to hold him and spend as much time with him as we wanted.

The Plan That Superseded Ours 

Grief, guilt, anger, sadness, relief were just a few of the whirlwind of emotions that David and I felt during that time. Although things did not turn out how we hoped and prayed, we knew that God’s plan was, and is, perfect. We have hope knowing that one day we will get to meet Aaron, again. The blessings that have come since our tragedy have been overwhelming. God certainly had a plan for Aaron, even though it was not the plan we hoped for.

Throughout Aaron’s journey, David posted updates and released his emotions through social media. It became an outlet to deal with the stress and emotion of what we were facing.

Through Aaron’s life, the AaronStrong Foundation was created. Its mission is to help others overcome adverse situations they may be facing. Life is full of challenges for everyone. When you face adversity, when you fall hard in life, it's not a question of if you can get back up, but rather a question of will you choose to get back up. We chose to get back up. Because we made this choice, our little baby’s life has touched more people than we could ever hope to know. His life was, and still is, so important to so many, and I thank the Lord above for giving us such a sweet gift in Aaron.

  

If you're interested in additonal information about trisomy 18 and 21, register for this month's webcast! 

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Topics: Down syndrome, aaronstrong foundation, trisomy 18, Trisomy 21, Edwards Syndrome, Aneuploidy

 

 

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