Erin M. - Myla Faith

Little Angels

In support of Pregnancy and Infant loss, I’ve interviewed a few amazing moms to share their stories. One in four women experience pregnancy and/or infant loss – and yet it is something almost no one talks about. Many don’t know how to talk about it with those how have experienced it or how to support them. I’m running a series of stories this year to help bring awareness to the issue and to show a face and story behind the statistics.

Myla 

Erin M. has an amazing family, and has known the greatest love and the greatest grief any parent could imagine. Erin has a charming 7-year-old, Scarlett, who has a heart of gold. She is caring, smart, sensitive, and works to bring joy to those around her. When Scarlett was 4, Erin was completely surprised to find she was expecting identical twin girls. The now 3 year olds, Savannah and Violet, have always been each other’s best friends while keeping mom on her toes (as only twin toddlers can!). In the spring of 2015, Erin was thrilled to find out she was expecting her fourth child. Erin and her husband Ryan decided to keep the gender a surprise, and were looking forward to adding to their family.

It was a relief to have a ‘normal’ pregnancy after having a twin high risk pregnancy. Everything was going well until 20 weeks, when she and Ryan went in for the in-depth anatomy scan. Erin had already had two successful pregnancies and knew what to expect, so she knew right away that something wasn’t right. The ultrasound technician wouldn’t tell her anything and went to get the doctor.

‘My doctor was on vacation so I had another doctor tell me she had "markers" they were concerned about and that I had to have a blood test that would take about a week. That doctor would not tell me anything else. I immediately went home and Googled it and found Trisomy 18. So I think I knew right away this wouldn't have a happy ending.’ They left with heavy hearts, so unsure about the future.

The next week was torture, not knowing what the results would be, and hoping and praying for the best. With all of these unknowns, they decided they wanted to know the gender. About a week after the ultrasound, they got the bloodwork back and found out that they would be welcoming their fourth daughter. Just moments later they got confirmation of the Trisomy 18 diagnosis. A moment that should bring them great joy, was tainted and bittersweet. Erin is thankful though for her wonderful doctor that was looking out for them even in the beginning. Instead of calling in the results over the phone on Friday afternoon, ‘My doctor wanted us to have one last weekend before we knew for sure.’ On Monday, their world was rocked in a way only a few can imagine.

Trisomy 18, which causes three copies of the 18th chromosome instead of two, happens in 1 out of every 2500 pregnancies. Only about 50% of Trisomy 18 babies are born alive and only 5%-10% live past their first birthday (for more information about Trisomy 18 at https://ghr.nlm.nih.gov/condition/trisomy-18#). Erin was now faced with the reality of what this diagnosis meant for her precious daughter.

Her doctor said there really was “no hope and that the chances are that the baby isn’t going to make it.”

At 21 weeks pregnant, Erin was told what no parent ever wants to hear: “She’ll probably pass as soon as she’s born.”

“My doctor said if we wanted to abort, we needed to start driving right then to go to a state where you could have an abortion this late. I said ‘No!’ He said ‘Good! I just needed to give the option.’ I could never live with myself. I felt that would be taking it in my own hands. I would leave it with the Lord.”

No matter how long she had with her daughter, whom they decided to name Myla, “If I’m only her mom for these 9 months, I’m still her mom”

The rest of pregnancy was hard, in so many ways. Erin opened up to her friends and family in the realest way, sharing her grief and her hopes for what would happen. But every day was a roller coaster of emotions and uncertainty, not knowing what the future would hold. Not knowing if Myla would survive the pregnancy or the birth, or maybe even endure a long hospital stay, was crushing and the worry was all encompassing. Everything was so uncertain, and it made planning so difficult. 

 “Others didn’t want to believe, they said they were praying really hard. As much as I know miracles happen, I believe in scientific facts. It’s everyone’s worst nightmare, and people don’t want to believe.”

The pregnancy was also hard in answering questions from well-meaning strangers.  “It was often easier just to pretend everything was okay than to share what was happening. I’d try to hide it, put a coat over it. People would say ‘you’ll have your hands even more full.’ I’m never going to say anything to anyone when they are pregnant.”

Myla's bunny

“I went to a boutique shop about a week after I found out. I wanted to go…but I kept getting too scared. It was really hard to be vulnerable in person because I was afraid I would fall apart if I started crying. I went in looking for a preemie outfit and stuffed animal for Myla. The boutique owner was very sweet. I told her I would most likely only need one outfit...so I wanted it to be special. We talked for a long time and she added me to her prayer list. She saw me holding the pink bunny stuffed animal and said it was free of charge. I still sleep with that bunny every single night.’

In addition to worrying about Myla’s future, Erin was also worried about her oldest daughter Scarlett. How do you prepare your 1st grader for something like this? Erin was blessed to have an incredible support network, including Scarlett’s school counselor and a hospice child life specialist who both worked with Scarlett to help prepare her and give her support. Erin and Ryan told Scarlett that they were worried about Myla’s heart (a problem Myla faced, along with many Trisomy 18 babies), but that they didn’t know what the future would hold.

The Delivery

The day before the delivery date, Erin reached out to friends and family to pray for the delivery. She didn’t know what to expect, but she prayed she’d be able to “at least meet her and love on her, even if it was only for a few days.”

“They didn’t check for a heartbeat when I arrived, my doctor didn’t want me to have to have a C-section, since I bleed a lot. He knew I wanted to have more children. He put me above everything, as I still have three kids at home.”

Erin was induced and it thankfully was ready to deliver about five hours later. All the nurses and the doctor were all prepared for any outcome. Once again, Erin’s doctor was looking out for her best interests. ‘My doctor interviewed all the nurses,’ making sure the day would go as smoothly as possible and Erin would have the best and most compassionate care.

Erin had a playlist prepared, and “How Great our God came on when we found out it was delivery time and everyone was getting ready. When she was actually born, I Hope You Dance was on.”

When Myla was crowning, the doctor said, “’I just want to warn you, I think she’s already passed.’ There was a lot of peeling on her head, which is not usually a good thing.” The actual delivery was quick, and in only 3 pushes, Myla Faith was born.

After the birth, the doctor estimated she had passed three days earlier. Erin thinks she knows, looking back, when it happened. “I was watching TV, and I felt a jolt, like something flipped. I wondered then if she passed, but there was a lot of fluid, and she wasn’t very active.” One of the common traits of Trisomy 18 babies is a large amount of fluid, making it difficult or impossible to feel the baby moving throughout the pregnancy.

After Myla was born, Erin’s husband, Ryan, went to go get Scarlett from the waiting room. She ran past as soon as he appeared, ready to meet her little sister. Ryan had to grab her as she ran toward the room, and he had to tell her that Myla didn’t make it. Scarlett cried “But I got her this teddy bear. I have to give it to her!”

“It broke him to hear her say that.”

Scarlett looking intently at her baby sister Myla for the first time.

“We had to bring her [Scarlett] to the hospital, as what she would have imagined would be much worse. We heard from other adults, who had lost a sibling when they were young, that it still makes them angry not to have been there to meet their brother or sister.”

When Scarlett first entered the room, she was very quiet. “She was very intense, looking at Myla. She cried ‘but I want her to be here.’ Then she just lost it, just sobbed on me. She was holding out hope, she really thought she’d get to meet her sister.”

“Everyone was in shock and pain. I realized ‘I am going to be in charge’; no one knew what to do, they are going to follow my cues. I had to almost be the adult in the room, and that sucked. Everyone didn’t know what to do. Scarlett was just sobbing.”

“I didn’t know what to say. I was worried about everyone else instead of myself.”

 “I just felt I was holding it together for everyone. I felt this feeling of calmness. Had to come from God. Even the nurses were all sobbing.’

Erin knew as she held her that Myla was gone. “That feeling of calmness after delivery--that was almost immediate. But when I held her lifeless body I knew ‘Myla’ was gone. She was whole and up in heaven with Jesus. We had lost a very dear friend and childcare provider to cancer not too long ago. Shirley Soles. She loved babies. She would sit and hold Savannah and just rock and rock her. I immediately pictured Shirley standing with Jesus eagerly waiting and ready to care for Myla for me. I pictured her swaddling her and just cuddling her in a rocking chair. It was amazing.

“I wanted to shout out to everyone crying—‘it's okay! She's okay! Jesus has her. And Shirley will watch her until I can’.”

After Erin’s family left, two of her friends and her husband remained. They all took turns and held Myla. ‘Making jokes makes Ryan feel comfortable, so this was the best thing for us. We just passed her around, were relaxed and laughed. We had her for about 5 hours. I felt calm, and at peace.’ I Hope You Dance [same song that played when she was born] played over and over, at least 20 times, throughout those hours after delivery and we would all smile whenever it came on.” Myla was already finding ways to comfort Erin.

“My doctor got me out of there in a few hours. I got to go home, sleep in my own bed.”

Grief

Erin knows that she will be Myla’s mom, forever and ever. “You’re still her mom, even if she isn’t here. It’s a responsibility you have to show her your love. You have to make the best what you have.”

 “I had to focus so much on everyone else. My grief was delayed. Maybe four months later, I was very depressed. I was mad.”

“I feel very numb, feel like I’m in a twilight zone. Everyone else is moving on, you are still stuck. It’s hard. It helps to know her heart is with God.”

For all the babies gone too soon, Erin has an incredible way of seeing the good. ‘All they’ll know is love. They won’t know about school shootings; they will just go to God.’

But Erin also had to be the glue helping her family grieve as well. In particular, Erin worried about Scarlett and how it has affected her. “I feel like she [Scarlett] has aged before my eyes. She can’t relate to the other girls in her class. She’s older.”

“She’s preoccupied with death. She’ll say ‘I don’t want you to die like Myla.’ If I’m in the middle of something, and she really needs to talk to me, she has a word, Love, that she says so I’ll know. I’ll stop what I’m doing and go talk with her.” Erin not only has to grieve Myla, she has to help her daughter grieve her sister, trying to answer all of the difficult questions Scarlett has.

“She asks ‘why did she have to die?’ all the time. Scarlett sleeps with Myla’s blanket every night.” Scarlett’s sensitive soul has had more grief than most little girls ever know.

“Scarlett’s counselor helps a lot. I hope this makes her more compassionate. Soon after Myla passed one of Scarlett's school friends lost a grandmother. Scarlett wrote them a beautiful letter about being in Heaven and how Myla was there with her.” Scarlett has a heart of gold, and she shows how much she cares whenever she goes.

Going on with day-to-day life is quite simply different, and at many times incredibly difficult. “I go to school pick up, and all the moms are talking, and I can’t talk with them. I don’t feel like I can relate. I just don’t have it in me to make small talk.”

“I’ve been reminded of what’s really important.” Erin focuses on her family and her incredible friends.

Erin’s husband Ryan grieves tremendously as well, although in a different way. “Ryan grieves quietly and alone.” He cries in the car, “when he was alone with his emotions.” A loss of this magnitude affects everyone.

Being around other babies was painful for Erin, especially immediately after Myla passed. “I’m okay with little baby boys, but baby girls… it’s so fresh. For Christmas, I picked a 12-month baby girl to ‘adopt’ and buy things for. It’s still hard buying baby clothes.” Buying clothes for a baby the age that Myla would have been helps Erin feel like she’s doing something.

“Time heals. I wish I could just fast forward two years to be where it is more of a memory. I can look in the future when I can look back and smile and it will be a happy memory, and not painful.”

“I want to have another baby but what if this happens again. How do I explain this to the twins [now 3 years old]. They didn’t really know what was going on with Myla. With Trisomy 18, I have a normal chance of it happening again,” but Erin still worries about how something like this would impact all of her children.

“I think my body says ‘You’re not ready’. Scarlett says ‘I just know you’ll have another baby’.” Right now, Erin is going through each day, doing the absolute best she can.

Advice

About a year before Erin lost Myla, she attended the funeral for another little angel. Afterwards, “I didn’t know what to say. I didn’t want to bring it up, I didn’t want make it worse. But you can’t make anyone any more upset, they are already in their own universe.”

“What helped was people just being there.”

“Everyone wants to ‘fix it’ but you are in your own hell, it’s not going anywhere. There is nothing you can say. You can’t fix it, it just sucks.”

Erin advises, “If someone you know loses a child, don’t hesitate to bring it up.”

For Erin, writing down what she was feeling helped her feel better. “I had to get it out, even if no one reads my Facebook posts, I need to get it out.”

“I go shopping in the evening, to get out and be alone. I listen to music. A friend sent me a ‘cry CD’. I cry every day.”

“You just have to go through it, even though it sucks.”

“It’s helpful to read about others, people that have been there.”

People will ask if Erin is willing to talk to a friend going through the same thing: “Yes, let me talk to them!!!”

That’s why she’s sharing this story with us. She wants to help others facing the same issues.

Erin is so thankful to have Myla choose her to be her mama. Even though Erin never got to hold her while she was still here, she has helped Erin and her family more than she could have otherwise. “I named her Myla Faith because she helped me find mine. Faith has become the most important part of my life. My new life—my “after” Myla life."

"It's a blessing really and I think sometimes she was sent here just for that. She took my hand and led me back to Jesus. She led our whole family to Jesus. I don't know how you could get through something like this without God in your life. When you are holding a lifeless infant you grew in your belly for 9 months... it's a nightmare. That tiny soul you saw on the sonograms--yawning and hiding behind her hands. That soul had to go somewhere. That can't be the end. That can't be all there is. Knowing with all my heart that I will hold her again one day... it's what keeps me going. Every day since has been hard."

"I'm learning now that grief has no time limit. It's love with nowhere to go."

"But I think there is one thing angel babies give their mamas—a special kind of joy. So much sadness mixed in—but that also brings the most amazing joy you could ever possibly feel because you have lived through the biggest sadness there is on this earth. I can look at my little girls now and feel a love that surpasses anything."

“I have a quiet understanding in my heart that everything will be okay. I love harder now. Because, really, in the end? Loving one another is all we have.”