Jess Witous
Loss of daughters due to genetic gene associated with achondroplasia
Hi Jess! What’s your story?
My name is Jess Witous and I live in Indiana with my husband Mike, our son, Michael, who is five years old, with two crazy dogs - Bruce Wayne, our black-lab mix, and Hally, an Irish setter-Golden Doodle. It’s a pretty crazy household! I’m originally from Rhode Island, living there for 25 years before moving to Indiana to begin the next part of life with Mike, who lived here. We both have dwarfism. We met through a non-profit organization called Little People of America which brings together the community in various ways and times throughout the year and promotes education and resources to both the medical field and families. In most cases when you meet someone, they don’t live near you, so we long-distanced dated for two years before I made the decision to move to Indiana. Almost ten years ago!
I enjoy a good time with family or friends, organizing, staying busy around the house, being outside (but don’t ask me to garden), and all kinds of puzzles. I have every i-spy book, plus a piece from my favorite page - no shame! I do actually have a weird hidden talent! I can write backwards with both hands - as in mirror image. It started when I tried to write with my non-dominant left hand, and when I started it I just naturally went backwards, so then I practiced with my right hand.
You share with me that both you and your husband have achondroplasia - can you explain what that is and how it affects your pregnancy?
Dwarfism is a genetic mutation that affects bone growth. There are over 200 types, with achondroplasia being the most common. For achondroplasia, it’s a dominant gene that starts off as a random mutation. Both of our biological parents (I’m adopted), are average height. 80% of children with dwarfism are born to parents of average height. There are recessive types of dwarfism, but the one Mike and I share is dominant. Because of that, it creates some odds for our pregnancies. Going back to high school biology, Dw x Dw = DD, Dw, Dw, ww. For every pregnancy, we have a: 50% chance the child will have dwarfism (Dw, our son Michael), 25% chance the child is born average height (ww) and 25% chance that we both pass the gene, and it results in what we call Double Dominant dwarfism (DD). It’s essentially two dominant genes fighting where neither of them wins, which results in underdeveloped lungs, smaller chest cavity, even shorter bone growth, and more complications around the spine and neck. It’s fatal, and most babies die shortly after birth. Because of the smaller bones, there is not enough marrow to create the hemoglobin in the red blood cells for oxygen delivery.
Did you and your husband always know you wanted kids? What was the discussion like knowing the risk involved?
Yes, 100% from the start we knew we wanted kids. We knew the chances, but probably like many think that this will never happen. It’s 25%, it’ll never happen. We did discuss what we would do if we ended up in the 25%, so we were together and ready to face whatever God gave us. We opted not to do any genetic testing and relied on growth measurements of the long bones (and a few other measurements) to understand more about the baby. Achondroplastic dwarfism doesn’t start to show until 23ish (roughly, my experience) weeks. If growth decline is showing earlier around 18 weeks, that could be a sign of DD double dominant dwarfism.
Can you tell me a little about your son and what that pregnancy was like?
Michael is a pistol. Typical 5-year-old; just non-stop, so smart, funny, adventurous, loving. My pregnancy with him was great. In hindsight, it was the best first pregnancy because I was so innocent, and up until the very end when I had a lot of joint pain, it was a very smooth pregnancy. We knew the odds, but I think because things were heading in the right direction for growth, the dangerous time zone came and went and we all felt very confident that our child was going to have dwarfism like us.
How about your second pregnancy with your daughter?
Margot Ann ♥️ It was rough from the start. I found out I was pregnant in April 2020. Pretty much at the start of the pandemic where no one knew what was happening or going to happen, and for how long it was going to happen. I was stressed to the max, having a two-year-old at home indefinitely, trying to work. I know we were one of millions, and some had it worse, but it was different. It was the first time I had morning sickness. I finally noticed I was late and on April Fools Day, no less, I took the test. I feel like that was our first sign. It's dark but here we are. I believe a lot in signs and dates and it just stuck with me.
Again though, we knew the odds but just still thought “We’re good”... I think I was at 19 weeks when we had our appointment, and I remember the dreaded “let’s go into the conference room to discuss”… The ultrasound was showing that he/she (Michael and Margot were surprises) was measuring behind a few days. Still so early, but it hit us hard. Another indicator, or result of this diagnosis is carrying extra fluid because of the smaller lung capacity, so it made things just a little more uncomfortable. Every appointment thereafter, baby was behind. I delivered Margot at 37 weeks, even though she was a healthy size baby at 37 weeks, her arms and legs were measuring at 23 weeks.
After the birth of Margot, what were your days like knowing her time was limited?
Margot kept us on our toes. When she was first born, she surprised all of us by breathing on her own, and crying. We had the NICU team on standby so they quickly whisked her to a connecting room where we could see her on camera. We all thought ‘HOLY SH*T, SHE DOESN’T HAVE IT!’. Truly. Because we didn’t do genetic testing until she was born, it was only an educated guess on what she had so now we started thinking maybe she’s just smaller for a child with dwarfism. It took three weeks to get the genetic test results back that did in fact confirm it, but those three weeks were amazing. She was doing amazing, I couldn’t believe we made it three weeks! We knew deep down, but we held out hope. We lived close to the hospital so we spent our days in the NICU and our evenings at home with Michael. On the weekends, Mike’s parents would take Michael so we could go together, and just get some time alone. Even after the diagnosis, Margot continued to do well. About 40 days after she was born, she crashed due to the low blood cell count in which a blood transfusion was the answer. Now the goal was to get her home. After about 10 weeks, she was transferred down to Indy to get a g-tube placement, and then she spent her last three weeks at home under Hospice. It was tough, long days and nights, but I wouldn’t change it. We got to be a family at home, and Michael got to meet his sister. Due to covid, he wasn’t allowed at the hospital, no one was. It was a beautiful but difficult thing to experience.
After her death, was there a specific low point or struggle you experienced?
Hell yes. I remember that night after everyone left, around 2 am. Mike fell asleep on the couch and I’m crying out to the spot where her bassinet was. Just ripped apart, while also thinking of Michael, who kissed her goodnight when he went to bed. How were we going to tell him? After that, Sundays were hard. She died on a Sunday, which is normally a day of rest, so I felt on edge every Sunday for a while. I couldn’t handle that not everyone was reaching out, those who I expected to. I couldn’t handle any stress, obviously. A few weeks after Margot died, Michael turned three and it was the start of the worst year of our lives. I don’t know if it was the “three-nager”, our grief, his grief, but it was a terrible time, definitely a combination. That was my low point, I hated our family dynamic. I was not happy with who I was and what this life was, but I knew I had to get through it. It took me longer than I wish to admit to learn that Mike and I had to change how we communicated with each other if we wanted to see change between all of us.
How did you manage to find joy in those low moments?
I just kept thinking about Margot. How lucky we were to have all that time with her. The memories I have. She was 2.5 months old when she died. I found joy in talking about her or doing things in her memory. Family and friends helped. Music. I fell into music to hear the words I was feeling but couldn’t express on my own. I would listen to it when I was sad, to cry and release the emotions. I would listen to it when I was happy, to cry and feel so close to Margot. Two years later the playlist is still on repeat.
You share that you are now pregnant again. Can you tell me a little about that pregnancy and how you are feeling?
Yes, so it’s been a while since I started this!... April 9, 2023 would be Bernadette Suzanne’s first birthday. I am now doing this in her memory, as well as Margot’s, but I told myself I started this interview for Margot, and now I’m completing it for Bernie.
In August 2022 I found out I was pregnant again. Yay, we were ready. We knew our love for Margot would never go away or be replaced, but we were ready to grow our family again. At the 18-week scan we saw the plateau in growth. We were devastated. We knew what this meant for real now. After a few weeks, I couldn’t stand the rollercoaster of “what-if” so we did get genetic testing to get the confirmed, double-dominant diagnosis. Once we knew that, we decided to find out the gender so that we could be prepared with special items. Another girl ♥️ , Bernadette Suzanne.
We made some different decisions, but kept her care and comfort in front of mind the whole time. She was born on a Saturday, came home Tuesday, and died on Wednesday. We had a full house, but it was what we wanted. Completely opposite of our time with Margot. Even though our time with Bernie was much shorter, I had moments with her that I didn’t get with Margot, so to me, they completed each other.
How have friends and family supported you during this time?
Friends and family who continuously check in or ask about us and the girls - that’s the support we needed most. We needed to know that they weren’t, and still aren’t, being forgotten. It’s been two years since Margot died and almost one for Bernie, so naturally the support has lessened, but the really special people are still out there. Giving us grace. Time and space to adjust without judgment. Wow, yeah, grace.
What do you want others to know about the loss of a child?
It’s hard, but what loss isn’t? No matter how much time you get with your children, it’s never enough because there is so much future ahead that they will not be a part of. So many what-ifs, what-would-they-be-doings, what-would-they-be-likes… It’ll be so long before I see them again. I fear I’ll forget everything about them. Will I always be able to picture them in my mind? For me, it’s been hard finding ways to honor them because they were so young. They didn’t have a chance to find their likes, interests, or passions, so for me, it’s been hard because I can’t say “Margot loved horses, so every year we ride horses or donate to an organization that supports horses”. If you get what I’m saying. I never feel like I’m doing enough or the right thing because I have to make it up.
How can a person best be there to support someone struggling with grief and loss?
Being open to the ever-changing needs. What works today may not be what’s needed another day, and it’s not meant to be rude or unappreciated. Simply “How can I be there for you today”, or offering a service like “bringing you dinner on Wednesday” directly but letting the griever decline or reschedule. Sometimes support can be overwhelming in the early days. Let them know you’re thinking of them and their person(s). Understand that even years after the loss, at every milestone we’re reminded that our person isn’t here, so sometimes it still does take our breath away. Sometimes it’s hard to be happy for others. We’re not NOT happy for them, but we’re just more sad for ourselves.
Any resources that were helpful for you that others might be able to utilize?
Music, as I mentioned above, was a huge resource for me. I tried all the therapy and stuck with art therapy with a grief and trauma counselor through Hospice. It was the best thing for me. I knew it was going to understand me but also challenge me and that's why I went with it. I still love it. Instagram accounts of people in similar situations, or anyone sharing about grief was another helpful resource. It was nice to connect with others but not have to speak or see people. I could just feel that I wasn’t alone and that these people were feeling the same way, and were able to express it so eloquently. I reshare all the time and I know it’s helped others because of the comments I get back. Early on, it also helped give people the “in” to talk to me. The conversation started, and because I was so open, they felt comfortable reaching out to offer support.
What brings you joy now?
Hearing Michael talk about his sisters, and seeing their pictures throughout the house. The idea of what’s next. We obviously have some big decisions ahead of us, but knowing that we’ll be in the place to finally take that next step is joyful. Knowing that as long as I can control it, I’ll never forget my girls and they will be a part of this family no matter what it looks like. It’s cliche but just finding joy in the little things and being with people I love.
Want to know more about Jess and her story? Follow her on Instagram @_jesswitty1