In May of 2018 my wife and I found out that we were having our first child. We were so excited and nervous since we had already suffered a miscarriage the previous fall. On July 23rd, my wife went for genetic counseling and NIPT testing, which was a standard requirement through her OB/GYN office. We had just made it to the end of the first trimester, so we were finally starting to relax and let ourselves feel more excited about the pregnancy when we received the news that the genetic testing came back positive for Trisomy 18. It felt like the floor was falling away from under our feet. My wife and I started reading online everything we could find about Trisomy 18. We were met with the typical rhetoric about our child being “incompatible with life” and most of the information touted that termination would be the suggested course of action. We were absolutely devastated and just could not believe this was happening after wanting to have children for so long. We went for a CVS two days later to be absolutely sure of the diagnosis. Every day waiting for the results felt like an eternity but about a week later our worst fears were confirmed. During the days that followed, we spent a lot of time discussing our options and talking about our family’s future. We had a few consultations and appointments but once we heard our daughter’s heartbeat and saw her on the ultrasound we knew that termination would not be an option for us. We decided to let nature take its course and see what our baby girl had in store for us. We wanted to do for our daughter what we would have done for any child regardless of the diagnosis. And our decision was solidified when we chose to name her Bridget. We had always wanted to name our first daughter Bridget and we wanted her to have this name even if she was not going to be with us for very long. We knew from a fetal echocardiogram that Bridget had several heart abnormalities, in addition to other characteristics typically seen on a baby with Trisomy 18.
The months went by and we did our best to keep it together. It was extremely difficult to be preparing for life and death at the same time, and we were always worried that each day might be our last with Bridget. But it’s amazing how quickly we adjusted to our new normal. We tried to celebrate each time we went to the doctor and got to see her on the ultrasound, but it felt bittersweet. My wife and I talked a lot about what kind of life we wanted for our daughter. It seemed as though the two options were to provide comfort care or to choose full intervention. We decided that if our daughter was only going to have a short life, we wanted that life to be in our arms, in our home, and surrounded by loved ones. We met with the palliative care physician at our hospital to discuss how we wanted to proceed. And as the due date approached, the more it looked like Bridget was going to make it to term and we would have the opportunity to meet her.
On Sunday evening, February 17 we drove to the hospital for an induction. We spent the night there, but my wife’s labor was not progressing as they had hoped. Our doctor was very worried about Bridget as the contractions were forcing her heart rate to dip. The doctor was concerned that Bridget would not be able to handle the delivery, and she told us our choices were to wait and hope for the best or proceed with a c-section. We had come so far and wanted so badly to meet her, so we decided to go ahead with the surgery. On February 18, 2019 at 10:34 pm Bridget Nora Hale came into our world. She was absolutely the most beautiful thing we had ever seen but she was not crying. My wife kept asking the doctor and staff if Bridget was alive. “She is…” was the answer but it was almost as if there was an unspoken “but”. The doctors placed her on my wife’s chest so that we could spend as much time with her as we possibly could. One of the nurses took my phone and told me she would take as many pictures as she could as tears ran down her cheek. My wife and I just kept asking Bridget to stay with us, just to stay a little longer. Those moments are still so surreal. Bridget started to perk up and about an hour later my wife was moved out of the operating room. We had several family members that were able to come in and hold Bridget. We had her baptized and were so ecstatic that we were able to meet her that night. As the evening went on Bridget continued to improve. We were moved to a mother/baby room and spent the night holding her and giving everybody a chance to spend some time with her. The next day she was doing so well on her own that the doctors started to mention that we may even be able to bring her home if she continued on this path. My wife and I had always said that our miracle would be to bring Bridget home with us. But we hadn’t prepared. We couldn’t bear the thought of leaving the hospital empty handed and coming home to an apartment full of baby essentials. So, our family scrambled to get us everything we would need. On Thursday, February 21 we were discharged and the three of us went home together.
We spent the next several weeks getting to know Bridget. She was a feisty little girl who had her days and nights mixed up. She amazed the doctors as she was able to thrive with no machines or feeding tubes. She was never able to breastfeed but each day she took more and more of the bottles we prepared for her. We had a lot of family come and visit, and over several weeks, Bridget was able to meet every one of her grandparents, aunts, uncles, and 8 cousins. We were able to celebrate St. Patrick’s day with our baby girl (a fitting holiday since both my wife and I are Irish). During that week, Bridget started to have apneic episodes where she would stop breathing for short periods of time. It was terrifying, she began to slow down as we began to prepare for the worst. On Thursday, March 21 Bridget passed away in our arms on our couch. She peacefully went to sleep and never woke up.
We are absolutely devastated to have to move forward without our baby girl, but we are doing our very best to look at the amazing impact Bridget had on all those who met her. We expected to share only minutes with her when she was born, and she somehow turned those few minutes into 31 amazing days. She taught everyone about just how precious life can be. She taught us about resiliency and what true toughness is. She taught us the importance of living in the present moment. She taught us that Trisomy babies are the furthest thing from being incompatible with life. She taught us that whether you have minutes, days, or years in this world, you have the ability to make a true difference in many people’s lives. We move forward in life with the hope of living up to the example she set for us. We are truly better people for having her in our lives.