Trisomy 18 Awareness Day 2019 - I Wish I Knew

What I Wish I Knew...

When my daughter was diagnosed with trisomy 18 when she was 1 day old, all I knew about trisomy 18 is that it meant she would die. Soon. It meant she wouldn't be eligible for the lifesaving but incredibly complicated heart surgeries we knew she would have needed even without the trisomy 18. I knew it meant no cure, no hope.

But I was wrong about the Hope part. We took Julia home at 2 days old, with gentle directions from the hospital staff to love her for the days we would have with her. They estimated no more than three days. We held her, spoke to her, sang to her, introduced her to family and friends, prayed for her, fed her, photographed her, loved her. We tried to pour a lifetime of love into every precious moment.

Hope began to seep in when Julia made it to about 2 weeks old, which was around the time of my 35th birthday. She began to tolerate more feedings and she became a little more alert and aware. Hope grew again when she was here to celebrate Christmas at the age of 4 weeks, just as her 6 year old sister prayed that she would. And then she rang in the New Year (2011) with us a week later and hope grew a little more.

Hope blossomed the day Julia first smiled. She was 4 months old, and joy grew along with hope that day. We soon visited the cherry blossoms in DC and the arrival of spring mirrored our growing hope. (Cherry blossom season is still my favorite time of year.) At 6 months, we sent out birthday announcements for her half year birthday. Hope.

Around 6 months is when I found (or was found by) other trisomy parents in a trisomy 18 facebook group. This was 8 years ago, and I didn't even think to look for such a group! I did not know there were many other families with children with trisomy 18 trying to find a way forward. Friends, this was Hope - in the form of community. We met other families online and in real life with children with trisomy 18. This was huge hope!

We enrolled Julia in occupational and physical therapy and set goals. Looking forward to any future before seemed daunting, but hope let us do that. We celebrated milestones and monthly birthdays. Family and friends came from all over the country to meet Julia and share in our life with her.

There were many days, too, when hope was challenged and hard to find. Appointments with cardiologists who confirmed for us that Julia was not a candidate for the complex surgeries her heart needed because her lungs were damaged by trying to compensate for her heart's difficulties. There were hard days when she did not feel well and struggled with a cold. Days without smiles. Those were the reminders of the reality of her condition. Still, we had been given so much more time than we could ever have expected at the time of her diagnosis.

We celebrated Julia's 1st birthday - a milestone reached by 10% of children born with trisomy 18 - with much hope and gratitude and surrounded by loved ones.

Julia passed away 16 days after her first birthday, suddenly, due to her heart condition. Although long expected, it was nevertheless a shock for us. We grieved and still grieve her loss. But the hope we had been given left an imprint. Now we know to look for hope when things seem dark. We try and share hope with others around us. Two months after Julia passed away, we met another little girl with trisomy 18 who showed us hope yet again. Hope does not erase the pain of loss or the challenges of living with a difficult diagnosis, but it does help us look for a way forward. And for us, it made all of the difference.

If you are facing a diagnosis of trisomy 18 or any of the many forms of trisomy, I recommend visiting the Support Organization for Trisomy Website at www.trisomy.org. There are now multiple facebook groups as well to offer information and support, including groups for those who have lost a child with trisomy.