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‘One Day at a Time’ with a Trisomy 18 Diagnosis

Our third pregnancy and fourth child…I have started to feel him move! I’m 22 weeks and 5 days. It is hard to believe Claire and Mary arrived just one week from today when I was pregnant with them. The small flutters of movement hit me at different times, mostly when I’m waking up in the morning. Everything feels as it should at 22 weeks except that our son, William Richard, has been diagnosed with Trisomy 18, a chromosomal abnormality with an extremely poor prognosis. You can learn more about Trisomy 18 here. 

We hadn’t planned to get pregnant again. We had already been through a difficult journey welcoming our identical twin girls at just 23 weeks and 5 days on November 14, 2010. They were due March 8, 2011. Mary, our stronger twin at birth, spent just two weeks with us before earning her angel wings on November 28. Claire continued to fight and came home after 103 days in the Neonatal Intensive Care Unit. 

Then, almost five years later, we welcomed our “rose from the heavenly garden,” Martha Rose, at 37 weeks. It was a stressful pregnancy with several trips to the hospital to make sure all was OK, but we made it through that chapter with thanksgiving for our beautiful girl.

Fast forward to May 2018 and we learned our family would be growing again. I was preparing myself for the pregnancy, knowing a cerclage surgery (to prevent preterm birth) would be coming soon, getting ready for the bi-weekly checks to be sure the baby was ok, and knowing I would need to put my beloved high heel shoes away sooner this time around. We made it through the pregnancy with Martha Rose and we could do it again.

What we had never thought of or planned for was a chromosomal abnormality for our sweet baby boy. In fact, we had never heard of Trisomy 18. When we learned about the extra fluid around his neck at the 12 week scan, we were told to expect a 50/50 chance of a problem, including Down Syndrome, Turners Syndrome, or a host of other less likely scenarios. So, we researched and planned for what we had anticipated would be Down Syndrome, Turners, or nothing. We had a 50/50 chance, right?

Then, on Friday morning, July 27, my incredible doctor, who has been with us since the beginning, called to share the news that the blood test had come back positive for Trisomy 18 and we were having a boy. It’s hard to put into the words the feelings that wash over your body when receiving news like this. I almost wanted to stop time, so I could allow my husband a few more moments of normalcy before dropping this news on him that Friday morning. I knew that we were starting a whole new journey way different that the journey we experienced with our premature daughters nearly 8 years ago.

We have learned a lot so far. What I think is the most difficult part of this journey is the true unknown of how long Baby William will be with us. Many of the babies diagnosed with Trisomy 18 pass away in utero, only a small percentage make it to birth, and very few make it past that time without significant medical intervention. We had planned to have an amniocentesis to confirm the results; however, the various markers on our sweet boy’s ultrasound were definitive. So, we go in every week for fetal heart checks to see if Baby William is still with us. His heartbeat continues to be strong.

His diagnosis is with me at all times…in the middle of the night, when I wake up in the morning, walking through the airport, driving to a meeting, and so many other moments throughout the day. I find myself thinking more about his funeral rather than his arrival at home. Today I spent time reading about birth plans and researching comfort care options for Trisomy 18 babies. As tears streamed down my cheeks, I thought about what we would dress him in for his funeral. I will never forget choosing what Mary would wear-her baptism dress given to us by the NICU nurses.

Yes, we have been down this road before with our sweet Mary. We held her as she took her last breaths at 2:15pm on Sunday, November 28, 2010. We worked with our wonderful local funeral home to create beautiful prayer cards for her and prepare a simple graveside service with meaningful scripture and letters we each wrote to her. She is buried with Paul’s father. We have done this before and we are strong enough to do it again.

When we traveled the NICU with Claire and Mary, we always said we were grateful for all things. We continue to have this outlook today. We truly believe good will come from this experience. Paul and I already see opportunities to support other families and expand the mission of TODAY is a Good Day, our family’s non-profit organization supporting families navigating the NICU, based upon our personal experiences over the past several months.

Most importantly, we are celebrating the time we have right now. The girls know about their baby brother and we celebrate him. The girls will give him a kiss before bed and always mention Baby William when we go around the dinner table sharing what we are grateful for in our family dinner diary. We also started a scrapbook for him highlighting our adventures over the summer, along with the beautiful notes we have received from friends and family. The girls know he will most likely be heading to heaven. We believe his sister will be standing there with open arms waiting for him when it is his time to be called.

We took the journey with Claire and Mary ‘one day at a time’ and we are taking this new experience with William ‘one day at a time.’ We will take today and be grateful.

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