The death of someone you love is one of the greatest sorrows you can endure. July is Bereaved Parent Awareness Month and we wanted to share our story, a look into our medical journey with Zane and Zayva, and coping with bereavement.
Zane was born on June 28, 2012. Before he was born, we only knew UPMC Children’s Hospital of Pittsburgh as a hospital for outpatient procedures. Our son Zachary, now 13, and our daughter Zoe, now 11, had a few small procedures there when they were younger.
Zane was born at our local hospital and flown to UPMC Children’s Hospital for multiple congenital anomalies and breathing difficulties. Zane had vocal cord paralysis that was causing many of his breathing and swallowing issues. At 2 weeks old Zane would need a tracheotomy and at 4 weeks old a g-tube. At 88 days after birth, Zane was able to come home for the first time. Children’s would become a second home to us as Zane saw many different specialists, had many surgeries, and spent a lot of time in the PICU when ill. In 2014, Zane spent some time on ECMO from a virus, and in 2015, we started our journey with diabetes.
When Zane was just a few weeks old we learned that he had a micro-duplication of his 17th chromosome (17q23.1q23.2). Later we would find out that Zane’s older siblings also inherited the exact same duplication from me, their mother. For six years, we were under the impression that the duplication caused Zane to be born with many of his medical diagnoses. After 3.5 amazing years with Zane, we would end up losing him in November 2015, to complications from an, at the time, unknown disease.
Before we lost Zane, we had considered having more children. We knew that because of Zane’s unknown diagnosis, there was a chance that we could have another child with the same medical journey. For many months we struggled with remembering how to live a life that didn’t include hospitals, doctors, and nurses. The hardest part was knowing we weren’t the only ones that were hurting. There were a lot of other people hurting and that hurt us too. We decided the best way for us to cope was to go back and visit the places we spent the most time with Zane. We wanted to give back to the people and the places that had the most impact on us and those who took care of our amazing fighter. It helped us start the healing process. As time went on our bereavement and grief turned to hope. We were ready to expand our family.
On April 18, 2018, we delivered a baby girl named Zayva. When she was born she presented with many of the same congenital anomalies as Zane. There were a few concerns on the ultrasound during my pregnancy and her being born just like her brother wasn’t a huge surprise.
Finding out that we would be on the same journey again was a little overwhelming, and there are a lot of unanswered questions. Zayva has been in the hospital since her birth and she also has a trach and g-tube. We recognize that being on this journey also means there will be more bereavement, there will be more grief, and there will be hard times. I’m not going to lie and say anything about this journey is easy. So many times little things will remind us of Zane that will make it difficult to get through the rest of the day. There are moments of grief for the things our daughter will never get to do or experience. But, there are many more moments of hope and joy. Zane has been our leader when it comes to caring for his little sister. She may not live a long life, but she will live her best life thanks to all her friends, family, and medical providers.