Bennett Feldman

After the birth of our daughter Baylor Grace in 2015, we excitedly learned in April of 2018 that we were expecting our second child. As with the first, the pregnancy progressed as expected and we were eager to reach the 20-week mark to learn if we would be adding a daughter or son to our growing family.

On that day, August 16th , we excitedly awoke, looking forward to our afternoon appointment. Upon arrival, we were quickly called back to begin the ultrasound – as the tech began the scan all seemed to appear fine as far as we knew with the exception that our little one was not being very “cooperative.” As a result, she noted that she was unfortunately unable to confidently share with us the gender.

Set to meet with the midwife immediately following, she entered the room and said “surprise.” Not thinking this meant anything other than her knowing that we were eager to know the gender but had not found out I responded, “yes, it certainly is.”  From there, the conversation that followed quickly became a blur when she noted that she was with us this day because she had recognized the name on the chart, having delivered our sweet Baylor nearly 4 years earlier, and unfortunately had some difficult news to share with us.  Our world immediately began to crumble. As she began the review of the ultrasound findings the terms “abnormal” and “major issues” became the pattern. We were told that while no specific diagnosis was readily available we would be sent to the University of Iowa for follow up to include additional testing. We were offered time to reflect and moments later somberly left the appointment. Many thoughts began to flood our minds. How could this be happening? What did I do to cause this?

As we journeyed to the U of I the following day we were hopeful that they would tell us that whatever it was that was wrong with our sweet baby was fixable through modern medicine and that we would in time deliver him or her, eagerly looking to the journey ahead. Through that appointment and a variety of tests we learned that our baby had a very rare disease called arthrogryposis that was further complicated by what was labeled as multiple pterygium syndrome. As a result, our baby’s outlook was very grim and his/her condition was ultimately noted as incompatible with life. Given the depth of the findings, he or she would not be expected to make it to full term.

Heartbroken and after some in-depth discussion with the high risk physician and accompanying care team we were moved to meet with a genetics counselor who took the time to educate us further on baby’s diagnosis. After much continued reflection, hours in fact, we left to begin the drive home very unsure of what the minutes, hours, and days ahead would mean for both our sweet baby and our family.

Just one week later, on August 23 rd , our sweet baby boy, whom we named Bennett William, which means “blessed angel” was born sleeping and delivered into heaven.

Although he was with us for just a short time, we are truly forever blessed.