By Kirstie and Nilo Verde
Parents to Elizabeth Rose
Dandy-Walker Syndrome
November 16, 2023 – January 15, 2024
Elizabeth was an exciting surprise. It was one of the most enjoyable pregnancies because I usually always have a hard time being pregnant. Everything was amazing and happy until we received bad news during the ultrasounds. Her brain and head were looking abnormal. It was in mid-August when we received her diagnosis of Dandy-Walker Malformation. We just couldn’t believe it since everything about the pregnancy had been practically perfect.
With all the emotions going on, we hoped and expected that her diagnosis was wrong—that it was a mistake. We talked about how, even if it was true, she would be healed and would still be able to live a beautiful, full life with all of her sisters.
Our doctors told us that our baby had a high possibility of passing before or during delivery. Because of how severe her diagnosis was and because her brain had not fully developed, they explained that she might not know how to breathe or function. I kept hanging on to hope, but the day I delivered her, reality really hit us. It was emotional, realizing what was ahead.
With it being such a rare diagnosis, and with us still not knowing why or what caused it, there have been times of confusion, heartbreak, and even anger. For a long time, I kept trying to come up with answers and find reasons for why this happened.
Elizabeth Rose spent two months and one week in the NICU. It was really hard, but I was so thankful to be able to stay at the Ronald McDonald House so I could be with her every day. My husband continued to work, and my two older children went to school but were able to stay with me during holiday breaks. It was very hard on them, and I’m thankful for my husband’s family, who helped make sure they got to school, had dinners, and were cared for.
Lisa Logan and the other nurses told me about On Angels’ Wings and called them for us. Such wonderful, wonderful people. I will forever be thankful for the compassion and support they gave us and for thinking about the long-lasting memories we would need, because sometimes it was hard to think straight and keep up with everything.
The photo session was amazing. Our photographer was so sweet, and all of my girls loved her. They still talk about how much fun they had taking pictures with Elizabeth. The pictures are everything to us.
My three-year-old daughter stayed with me, and I’m thankful she has memories of seeing and being with Elizabeth. I’m also thankful for all the nurses, chaplains, and counselors who supported me during the horrible times we were experiencing. Them, along with God, were the only reasons I had any strength. I still look back and wonder how I made it through.
Elizabeth fought so hard to be with us for as long as she was. It was a miracle. She loved her binky, loved being sung to, and loved being cuddled with love. Her eyes shined like the moon—big and blue. She was absolutely beautiful.
Even though she isn’t physically with us, she still received her miracle of being healed. She taught me the importance of life and not giving up. Because if she had the strength to endure everything she was going through, so can I, no matter what life looks like.
After losing Elizabeth Rose, life has been hard, but we’re trying to make the most of it. We talk about her every day. Last year, we still celebrated her birthday. We took a cake, balloons, and her picture, sang “Happy Birthday,” and took pictures for our children to keep and remember. This year she would have been two.
Then, in April of last year, we received the news that we were pregnant again. She truly is our miracle baby. I was on birth control and had been told not to get pregnant because my uterus could rupture and kill both of us. I couldn’t believe it. It was so crazy.
It was a very rough pregnancy, especially because I had just had a C-section not long before having Elizabeth Rose. But we made it to the end and delivered a beautiful baby girl. We named her Faith Rosalie. Her middle name honors Elizabeth Rose, and we all know what faith means—having faith in the scary unknown and hoping everything will work out.
Faith is healthy, and she looks just like her big sister Elizabeth. Blue eyes and all. She was born the day after Christmas, which made her a little extra special. At the beginning of the year, we lost our beautiful baby girl, and by the end of the year, we gained another beautiful baby girl. We are thankful, but she will never replace Elizabeth.
Faith is a year old now, and because of the amazing pictures we have of Elizabeth Rose, we can now share those memories with Faith and keep Elizabeth alive within our hearts.
We attended the OAW Butterfly Release last year, and it was so beautiful. I’m hoping to get involved more, but I’m still grieving and sometimes it’s hard to control my emotions. I’m thankful for the emails I receive and that On Angels’ Wings remembers our Elizabeth Rose.
If it wasn’t for this organization, we wouldn’t have such beautiful pictures to remember her by. I tell others whose babies have been diagnosed with something difficult to join and be a part of this community because it helps us not feel alone. There are so many wonderful families who have been through hard times and who have also been blessed with support and rainbow babies. It helps build encouragement and faith.
I would love to help create more awareness about Dandy-Walker Malformation because it’s so rare. I’ve even thought about becoming a photographer for On Angels’ Wings someday. I keep thinking about it, but I don’t know how to get started.
I tell everyone about our experience and about the once-in-a-lifetime gift of having pictures done by On Angels’ Wings. I tell people, even if they don’t have children, because you never know—a family member, a friend, or even a stranger they come across someday may need this kind of support.
I can just go on and on about them. And I’m thankful that through it all, we have never felt forgotten, and neither has our beautiful Elizabeth Rose.
