Finding Hope A Half A World Away
There are over 200 types of dwarfism offering a wide range of diagnoses. Each diagnosis represents a little person, with varying characteristics and outcomes. For followers of Miracle Mann, you have become familiar with a specific type of dwarfism called Thanatophoric Dysplasia (TD). Considered lethal, this is a diagnosis no parent wants to hear about their child.
My son was given this diagnosis after his birth yet he has defied all odds to become a survivor and be a living miracle. Is there hope for babies diagnosed with TD? I believe so.
Today, I’d like to share with you one young families journey. Dominika found out on October 6th, her son has TD. She is 23 weeks pregnant with a baby boy named Vernon. She is a wife and a mother to a five-year-old boy named Liam. Originally from Illinois, she is currently with her husband, Adam, who is serving for our military in Japan. Here is her story:
Eleven Hours Ahead
MiracleMann (MM): Where do you live now?
Dominika: We are a Marine family on tour in Okinawa for three years. It is a small island with small island culture. The food is delicious, and the sights are incredible. My husband and I have made up for not having a honeymoon by exploring some of the natural beauty of this island. My favorite thing about being here is watching my son create memories most children back home can never have. He has learned to speak some Japanese. At age 4, he went snorkeling in the open sea with the most beautiful aquatic life for the first time. He has hiked some of the most gorgeous mountains and played in natural waterfalls. He loves it here, but he wishes he could have his grandma here to experience it all with him.
MM:How did you meet your husband?
Dominika: My husband and I met when we were kids. His dad lived in my neighborhood, and when he’d come to visit, I would always try to be around him, but he didn’t acknowledge me until we were older. After many years, we decided to give it a try. It didn’t take long for us to fall in love.
MM: What was your first pregnancy like with Liam?
Dominika: It was typical. I had morning sickness. I couldn’t even think of eating, ran out of breath after five steps and everything made me cry. I had an amazingly healthy pregnancy, but I was 18 years old. I always thought something was wrong. If I didn’t feel him kick by 9 AM, I lost my mind.
A Second Pregnancy
MM: How did you feel when you and your husband found out baby Vernon’s possible diagnosis?
Dominika: Adam was shocked. He didn’t know what to say or think. It didn’t register for me. I heard and understood what the doctor was telling us, but I just had the overwhelming disbelief feeling like “this isn’t happening, this CAN’T happen.” I don’t ever think I can feel the shock and hopelessness I felt that day again.
MM: How does being in Japan make your circumstances different than if you were in the states?
Dominika: Being in Japan, especially Okinawa, is hard. If we were in the States, we would have access to doctors with answers or at least knowledge of TD. As of now, our only options for doctors are naval because we are restricted by military benefits. We can’t get the help or answers we need here.
Found: TD Survivor
MM: When you found out there are survivors of TD, how did you feel?
Dominika: When I was first informed of TD by the specialist, she told me it is lethal in all cases. She explained it’s not genetic because nobody has lived long enough to pass the gene. (MM: It is a random genetic mutation.) She told me this is a death sentence and essentially convinced me not to have hope. So that’s what happened. I lost all hope, and I mean there was not a single speck of hope in my soul. But once I discovered you and Samuel, I could feel my soul lighting up a little. To know that the Greek meaning of Thanatophoric is death bearing, yet there are people who are alive and striving with this very condition is just amazing. You can’t help but to gain hope at that point.
MM: How did your specialist react to hearing about survivors?
Dominika: I was in a meeting with the specialist, head nurse and case management director of the hospital and all three kept telling me not to have hope. “Nobody survives this,” they all said. Until I told them about Samuel and the others you have informed me of. The room fell silent at that point. I looked at the specialist and said “Samuel is eleven years old and there are some who are older than him.” I thought her jaw was going to hit the floor. She had nothing to say but, “Wow, I had no idea.” I didn’t hear her or anyone else in the room try to convince me I shouldn’t have hope again.
A Parent’s Heart
MM: What is your greatest fear in having baby Vernon?
Dominika: My greatest fear, even above losing him, is that he will suffer for the entirety of his life, whether it be minutes or years. I don’t want him to be in pain. The thought he may essentially suffocate after I give birth is the most terrifying thing to imagine. My husband fears that he won’t get to meet him due to the fact that he will stay behind in Okinawa until it is time to give birth.
MM: What is your greatest hope?
Dominika: My husband’s greatest hope is that baby Vernon is born completely healthy. While my hopes are a little more realistic. Looking at the sonograms, I know he’s going to have a skeletal problem. So, my hope is the diagnosis is wrong or it’s something less life threatening. Something we can work worth and try to correct.
MM: How are you finding peace and comfort in the midst of this challenging circumstance?
Dominika: If we didn’t have God or each other then we would have no peace or comfort. But, we pray a lot, and we lean on each other. My husband is my rock. I’ve had days I just wanted to give up and nothing but my grief mattered to me. My husband always pulls me out of it, and he puts me first. We talk to our Chaplin as well, and he lifts our spirits quite a bit.
Sharing With A Sibling
MM: Have you shared with your five-year-old son, Liam the circumstance surrounding his brother? Is he inspiring you?
Dominika: My husband and I have agreed not to tell our five-year-old about the possible fate of his little brother. First, we don’t know how to tell him yet. Second, we don’t want him to be sad through this pregnancy. We want him to enjoy the feeling of being a big brother for as long as he can. Third, we don’t want to prepare him for a death because we are holding out for a miracle. We hope never to need to have that conversation with him. He does inspire us; he will touch my belly and say, “Mommy, you know how I know the baby is going to be beautiful? Because he is going to look like you.” He always talks about how big the baby (my belly) is getting and how strong his little brother is. If it weren’t for my son’s perception, I don’t know if I could have a positive outlook day to day.
Help From A World Away
MM: How are your family and friends supporting you?
Dominika: As of now, our family and friends are putting all their energy and effort into getting us home so we can give this amazing little fighter a chance to show how much fight he really has. Our family and friends know that we don’t want sympathy or for people to feel guilty when they talk to us. They ask us what we need from them. They hear us when we talk. We have discovered we have some of the best friends and family we could ever ask for amongst all of this.
MM: What words would you share with others who receive a negative pregnancy diagnosis?
Dominika: If there is anything I’ve truly learned through my pregnancy, it is I have to trust GOD. Remembering He has a plan, even if I don’t know what it is. I know now that even in the most unimaginable of circumstances, you HAVE to find hope. If you can’t find it, you keep digging. It is absolutely necessary to have hope and remember that GOD is in control, not the doctors! Hope, GOD, and a support system will get you through it.
Are you inspired and uplifted by this story unfolding as I write? My hope is this blog and the upcoming memoir, Miracle In My Living Room continues to give hope to moms like Dominika. Her husband has even pre-ordered the book. (See link below to pre-order.)
What Dominika was too humble to share is her family has set up a Go Fund Me page to help bring this young family back to the United States from Japan. If your heart has been touched by her bravery in the midst of such a challenging circumstance, please drop her an encouraging note and a donation if you feel so led.
Author, Miracle In My Living Room