Prenatal Life Limiting Diagnosis, Trisomy 18 & Carrying to Term | Q&A with Rosella Martinez

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I am honored to share an interview with Rosella Martinez about receiving a prenatal life-limiting diagnosis of Trisomy 18 for her daughter Evea Pilar.

Rosella, thank you for sharing your story with us. We are so grateful.

If you or someone you know has received a life-limiting or terminal diagnosis for your baby,
please check out our resource page by clicking the button below.

Life Limiting Diagnosis Resource Page

HI Rosella, TELL US ABOUT YOURSELF.

I am a graphic designer. I love starting off with a blank page and bringing a visual to what most people can only imagine in their heads. I love offering branding and identity to someone's idea or someone's small business dream. Five years ago, after having our 2nd daughter, I fell in love with photography and thought I could marry my graphic design with photography.

I enjoy photographing families so much, especially my own! Now that I have my own little ones, I've seen first-hand how fast they grow, how quickly seasons change and how hard it is for mamas to make time for family photos. In the meantime, the years pass us by, so I absolutely love when I get the chance to photograph little ones and families. I feel as though I'm freezing time for them and weaving together a part of their legacy - so priceless. And yes, my favorite models to photograph are my dear husband and our 2 sweet girls.

TELL US ABOUT YOUR DIAGNOSIS.

On Thanksgiving of 2017, we found out we were pregnant with our 3rd. We were surprised, but also so elated. We had been talking about having a 3rd for quite awhile, but the timing just never felt right. It was actually such a relief when we found out we were expecting - it was as if the decision had been made for us. Unfortunately, I was never able to fully enjoy the pregnancy - even in my 1st trimester, when all looked fine on screen, I carried a huge uncertainty with me, nervousness and anxiety like I've never had before. I dismissed it as morning sickness or nervousness about adding to our family, but deep down, I knew from the very start that something was very wrong. My doctor tried to reassure me, but my uneasiness and doubt grew as more time went on.

Instead, everything continued as expected, until our anatomy scan at 18 weeks. We were excited to find out if we'd be adding our 3rd daughter or 1st son to our family, but my gut-wrenching anxiety overruled even then. I'm not sure what it was - the sonographer never showed any signs on her face - but I knew something was wrong just by looking at her. It started with, "It's a girl" and ended with, "We're seeing some abnormalities that are concerning".

The abnormalities started with our girl being too small, her arms and legs being "too short" in comparison to her body. They also feared her head was not growing appropriately. I kept repeating that baby was only 18 weeks, but my doctor encouraged me to go through with the genetic blood testing so we could rule out anything major.

A few days later, we met with a specialist, who gave us absolutely no hope. She was pretty intent on what she saw. A few days following the specialist, I received a call from my doctor - the genetic testing had come back as "High Risk" for Trisomy 18, more specifically, it had come back with a percentage of 98%. Our world had been turned upside down and suddenly all of my anguish and worry and anxiety made sense. Through all my tears, I did as much research as my heart could take. The abnormalities seen at the anatomy scan were all typical for a baby with Trisomy 18.

TELL US ABOUT THE OPTIONS YOU WERE GIVEN AND YOUR DECISION TO CARRY TO TERM.

After our initial diagnosis, it was specialist after specialist. My husband and I were continuously told of the risks and that our baby would likely not make it to term. We were given the option to abort the pregnancy, as I was still 20/21 weeks along. but there was no way we could. We kept seeing her on the screen, so whole, complete, moving around gracefully and peaceful. Her organs were exactly where they should have been, she was complete from the top of her head to the bottom of her little toes. Regardless of the risks, she was our baby.

It was an incredibly hard diagnosis to face as the risks for Trisomy 18 are 1 in about 3,000. If I had been in a room with 2,999 other expecting mothers, I was the *one* and that thought alone, haunted me. We had 2 previous daughters, who were healthy and thriving with very "standard" pregnancies and no complications. No complications in either family and no history - how could this happen? And we truly played that question in our minds over and over and over. Sometimes silently, sometimes audibly, in complete confusion and despair.

Eventually, after some soul-searching, God reminded me that this is the baby He had entrusted us with. It forced us to change our perspective and suddenly, it became my honor to carry her, for as long as she'd let me, because it was the one and only thing I could do for her. Trisomy 18 is a fatal diagnosis with no cure, but she was our baby and there was nothing we wouldn't have done for her. In God's kingdom, she was made lovingly in His image - Her abnormalities were only earthly, but to God, she was perfection. We relied on that and trusted God's will for her life. We prayed day and night that He'd be merciful enough to send us a miracle, but we also prayed that He'd be merciful to take her peacefully, while in the womb, when the time was right. And although I desperately hope and pray we never face that kind of heartbreak and uncertainty again, we have no regrets - if we had to go back, we would do the very same thing again.

HOW DID YOU PREPARE FOR YOUR BABY Evie’S BIRTH?

The uncertainty is what nearly drowned us - by far, the hardest part of the pregnancy. Doctors couldn't tell us what to expect because each baby is so different. Some babies pass very early on, others somehow make it to term and still others, live for a few hours to a few weeks- we truly had no idea what to expect. So we waited, day after day, week after week, month after month. And with each passing appointment, I would be relieved that she was still with us and in complete despair because she was still with us. At the time, our other 2 daughters were 4 & 7 - old enough to see their mommy & daddy in their despair, but not old enough to understand why.

Seeing them so incredibly excited to meet their baby sister was the 2nd hardest thing. For their sake, we continued along as normally as we could. We did a gender reveal cake, we talked about their baby sister and we named her, Evea Pilar, who lovingly became, "baby Evie".

As the weeks carried on, my belly grew bigger and bigger and very slowly, we started to share our diagnosis with friends on Facebook. Even with all of our abounding hope that believed that God could change our diagnosis and that maybe, just maybe the doctors could all be wrong, we bought nothing for her, except for one tiny pair of shoes.

When strangers would congratulate me, I would smile and thank them. I was carrying life - and that was a miracle worth celebrating, regardless of all the strings attached. My small group (my bible study group) planned the sweetest surprise baby shower for me and bought us all the basic essentials we would need in the very beginning, in case our Evie would make it to term and through birth.

Mostly, all we could do, was wait.

IS THERE ANYTHING YOU WISH YOU HAD DONE DIFFERENTLY OR KNOWN TO DO/EXPECT?

We were unsure if we wanted family at the hospital to hold our baby after birth. I had no idea what awaited us. I had no idea what she would look like, how everyone would deal emotionally, but most of all, I had no idea how I would deal, emotionally. And because of that, we kept to ourselves.

After giving birth and meeting our Evie, we still weren't sure if it was something we should share with our 2 daughters and our families. Evie's skin was wrinkled, as she was so tiny - the size of a 27 week baby. Her skin had started to decompose very quickly and she had some scarring and although fully formed, was not filled out. We weren't sure that our 4 & 7 year old could handle seeing that.

Sadly, in the end, only 2 family members "met" her and only one physically held her. I regret that at times. I wish more of my family had held her. I wish we had someone taking our photos so we'd have that memory. That is my only regret. Perhaps if I had known then, what I know now, I would have made sure we had had more family there for us. But we did the best we could with as many emotions as we had soaring through our bodies.

What do you wish you would have known about carrying a baby with this diagnosis to term?

I wish I would've known that the grief wouldn't stop as soon as our Evie passed. We were in such despair at the time, that the unknown almost swallowed us up alive. There were nights that I would beg God to make it all end, because I just couldn't take it anymore. I thought that once we knew how this chapter of our life ended, the unknown would finally be over and we could move on to grieving our baby and all the pain we had just survived. But I didn't realize that grief takes on so many different forms. I knew I would grieve her presence, but the truth is, as time has gone by, I have also grieved every stage of her life that I'll never get to witness, every experience our 2 other girls never have as her big sisters and the picture we lost of the life we thought we'd have, that died along with her.

TELL US ABOUT the day BABY evie was born.

We lost our Evie at 35 weeks. We went in for a routine ultrasound - the last one until I'd be induced at 37 weeks. I hadn't felt her move all weekend long, but she wasn't a big mover and after making it so much farther than the doctors had predicted, I didn't think too much of it. About 20 seconds into our ultrasound, the sonographer and I looked at each other and I knew there was no heartbeat.

We were admitted a few hours later and I was immediately induced. The plan was to start 2 medications - one overnight and the 2nd, Pitocin, in the morning. But I had had so many contractions throughout the pregnancy, the first medication shot me into full blown labor within a few hours and at 2:16am, in complete silence, our baby was born sleeping. She weighed almost 2lbs - the size of a 27 week old baby. My body had carried her for 35 weeks, but her abnormalities had caused her to fall behind in progression each week. But, she was complete & whole from head to toe. While we waited for her, we kept hearing lullabies playing all through the night, but we knew none would play for our girl. There was nothing else in the room in preparation for our baby, there was no cry or scream, no bassinet. She was born on the 26th of June, 2018 - about one month before her due date.

Is there anything you would have done differently?

Yes, I wish I would have contacted an organization such as Now I Lay Me Down to Sleep - this is an group of photographers that specialize in taking newborn shots of stillborn babies and their families, free of charge. I knew of them, but because our timeline was so unknown, without a date, it became too difficult to plan for anything. The day of our ultrasound was the same day we were admitted for delivery, so there was no time to call and plan for photography. I wish someone from the hospital, who knew we were coming in had done that for us.

Nevertheless, the nursing staff took photos of our daughter and took photos for us - they are not professional by any means, but they are cherished, nonetheless.

Your emotions may lead you to think that you'd rather not remember anything of the day and that you'd rather not have photographs taken, but take my advice and have the pictures taken. Be in them - in time, they will be cherished. The photographs and the outfit our girl wore that day are all we have left of her here on Earth.

WHAT ENCOURAGEMENT/ADVICE WOULD YOU GIVE TO SOMEONE WHO LOVES A MOM WHO HAS JUST RECEIVED A SIMILAR DIAGNOSIS FOR HER BABY?

If you've received a similar diagnosis, I'd hug you and tell you that you will make it through. Even on the days where you feel as if life will drown you, I promise you will make it through. Even through the silence and the darkness, God is with you. He promises to never leave us or forsake us and as hard as that will be to rely on after such heartbreaking news, cling on, even if it's just by a thread.

As much as I went through rollercoasters of anger, sadness, despair, hope, rinse and repeat, I clung to my faith, even if only by a thread.

Our story had been written - I could either live it with God or without. Except with Him, I had immeasurable hope and that made all the difference.

And please don't live with this by yourself - reach out to those you love and let them know. Allow them to help you, love on you and be there for you. Don't try to live through this on your own, in silence - this season is already so terribly hard.

The wisest words my husband spoke to me after our diagnosis, were, "If we truly lose her, do you really want us to live through that alone?" Those were the words that made me share more and more about Evie and our story.

What advice would you give about how to best support a mom who has been given a life-limiting diagnosis for her baby?

Please don't tell her that God won't give her more than she can handle. It's just not true. I heard things like that, along with, "God needed another angel", or "There's a reason for everything".

They are just not true - God definitely gives us more than we can handle...that's why we need Him, God doesn't have a shortage of angels and although I believe there is a reason for everything, that's the last thing that a grieving mother who will never hear her baby's cry, her first word or watch her take her first step, wants to hear.

Just be a listening ear - we have so, so many thoughts whirling around in our heads and although she may want to be alone with her thoughts, she also desperately longs for the company.

Invite her out - even if it takes a few tries to get her out of the house - just don't let her feel alone.

Also, ask. Ask how she's doing, how she's feeling, ask about her baby, just ask. People think it's such a taboo subject, but I love when people ask me about my Evie. Sure, it's sad and always will be, but it's also the only way for me to keep her memory alive and share her with others.

I'm sure it was hard for people to be there for me. It's not easy to know what a grieving parent needs, because what they need the most, you just can't give them. But my greatest advice in this area would be to just help. Go over to her house and just start helping. Clean her house, bring her some meals, if she has other children, take them out for a few hours. 2 days after we lost Evie, I had a very precious friend who came knocking on my doorstep. She probably wasn't sure if I'd be up for company, but I was honestly relieved to have company. I had 2 little girls that I couldn't be there for initially because I was so numb, I just went through the motions. My husband had already returned to work very sadly and it left me and my thoughts. I was so relieved to have her company. But more than that, she brought gifts for both my girls and they were elated. I was so touched that she had thought of my family.

I had dear friends that started a meal train for us and left a cooler outside with a note that read to please leave the meal in the cooler in order to respect our privacy. One friend, without asking, brought us groceries to our door. That alone, made me sob. These were all such heartfelt gestures. These friends just took it upon themselves to be there for me and my family, all in their own way.

Please don't wait for her tell you what she needs. I heard so many countless times, "Let me know if you need anything!" But I didn't know what I needed. I needed to survive, take care of my 2 surviving children and somehow keep my marriage alive in the interim. Trust me, she has no idea what she needs in the fog of that moment - she's just surviving.