Nikki and me loving on Jackson at the Good Samaritan Hospital NICU

Today (March 13) is Trisomy 13 Awareness Day –– a day that will forever live in infamy in my household.

Trisomy 13, also known as Patau Syndrome, is an extremely rare chromosome disorder that affects about one in about 10,000 babies. Trisomy 13 is in the same family of chromosome disorders as Trisomy 21, most commonly known as Down Syndrome.

Whereas many people with Down Syndrome live independent lives and have an average lifespan of about 60 years, the outcome for Trisomy 13 is typically fatal, with the average lifespan about 2.5 days.

My wife Nikki and I learned just more than a year ago, on March 7, 2018, that our then-unborn son Jackson had Trisomy 13.

In just a matter of days, we went from feeling the excitement of the arrival of our firstborn child to the horrors of a trisomy 13 diagnosis. On March 5, at 26 weeks of pregnancy, Nikki went to Good Samaritan Hospital in Cincinnati for a full anatomy ultrasound scan. This was of course the first and subsequently only appointment that I had not attended. While she was in the ultrasound room, I was at work having a routine work day. That is until my phone rang; it was Nikki calling me and I immediately began to worry that something was wrong since I knew that her appointment had just started. When I answered the phone, I was on the speaker phone with both Nikki and the maternal fetal doctor, who informed me that she spotted abnormalities on the ultrasound, in Jackson’s heart and feet, an indicator of a possible chromosome abnormality.

The next day Nikki had an amniocentesis performed to test Jackson’s chromosomes, and one day later on March 7 we met with a genetics counselor who told us initial testing showed that Jackson had trisomy 13.

This news was devasting and heart breaking; we knew nothing about this disorder other than that we were told that Jackson would most likely be a stillbirth.

Imagine being told that your child is going to die before his birth.

With 13+ weeks before Jackson’s due date, needless to say the remainder of Nikki’s pregnancy consisted mostly of anxiety and hopelessness as we feared the worst.

Thankfully there are support organizations for people who are facing a Trisomy 13 diagnosis.

The Support Organization for Trisomy (SOFT) was a tremendous help to us. They provided answers to many of our questions and helped us prepare for Jackson’s arrival. They provided us hope that Jackson was not going to be a stillborn as there are many examples of Trisomy 13 children who’ve lived for several years. Heck, there is even a woman in the SOFT community who just turned 40 years old. How awesome is that?

The biggest support that SOFT provided to Nikki and I was in the preparation of our birthing plan. They helped us dot every I and cross every T, ensuring our birthing planned was as detailed as possible in order to give Jackson the best chance to, not only survive the delivery, but also to live as long as possible.

Thanks to the birthing plan and the awesome NICU staff at Good Samaritan and Cincinnati Children’s Hospital, Jackson defied the odds and lived 31 days, May 4 through June 3, 2018. This is despite Jackson arriving early at 34 weeks and 3 days, and despite being a male (boys with trisomy tend to have worse outcomes than girls).

While we are absolutely devasted that Jackson is no longer with us, Nikki and I are so thankful that we got as much time with him as we did. Many Trisomy 13 families don’t get that much time with their newborn child.

So, what can you do to observe Trisomy 13 Awareness Day?

There are many simple ways anyone can recognize this meaningful day. The first is simply to wear yellow on March 13. Another way is to reach out to anyone you know that’s been impacted by a Trisomy 13 diagnosis. A simple call, text, Facebook message, etc. would be greatly appreciated. A third way is to publish a social media post using the hashtag #trisomy13awareness. And if you’re feeling generous, you can donate to nonprofit organizations specific to Trisomy 13; there are several to choose from, such as SOFT, Hope for Trisomy 13 and 18, and the International Trisomy 13/18 Alliance.