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Luke Anderson Wilde


Diagnosis day
As soon as we left the house the morning of Nov. 12, 2019, I could tell it was bound to be a bad day.

We live in Los Angeles - which is notorious for its bad traffic.

I left the house at 6:50 a.m. to drive to UCLA and meet my husband, Blake, for a routine 12-week ultrasound - 6:50 a.m. for a 8:30 a.m. appointment, that is. I was sure an hour and 40 minutes would be plenty of time to travel the 8 miles from our apartment to UCLA Medical Center, but as is the case with LA traffic, there's no telling what will happen. That drive at that time of day could take as little as 25 minutes, but on Nov. 12, for whatever reason, an hour and 40 minutes wasn't enough time.

We arrived about 10-15 minutes late to the appointment, so I left our older son, Jack, with Blake and the car to park and I ran up to check in. They joined me a few minutes later and just a few minutes after that, we were taken into the ultrasound room.

A tech came in first and pulled up my information on the machine and rubbed the ultrasound goop on my stomach. She moved the probe around a bit, checked the heartbeat so we could hear it and then sort of turned the screen away from me. At first, I tried to tell myself it was just so she could see it better. After a short look, she said she couldn't get a good enough view so she was going to have the doctor come in and they would do a transvaginal ultrasound instead.

As she left the room, she wouldn't look me in the eye.

When the door shut, I said to Blake, "Something is wrong." I could already feel it.

Blake tried to reassure me, saying he was sure her brevity didn't mean anything, but I later found out he also felt like something was wrong but was trying to help me stay calm.

I got prepared for the transvaginal ultrasound and a few minutes later the tech returned with the doctor who specializes in ultrasounds. They began the process, and the doctor asked the tech to move the probe to a few certain angles. I still couldn't see the screen, so I was zeroed in on the doctor's face, watching the moment it fell.

"Something is wrong," I said. "I can tell."

"I'm so sorry, but yes, something is very wrong," she said.

I immediately burst into tears. I am the type of person that in the moment of bad news, I feel things very deeply. I was devastated. I demanded - probably somewhat tersely in hindsight - that she tell me immediately what was wrong. I honestly don't remember whether she used the word anencephaly in that moment. If she did, whatever she said went right through me and she excused herself so I could get dressed before she came back in to talk more.

With Jack in his arms, Blake came to put his arms around me. In that moment, all I could think were two things: My body had failed us, and I had failed Jack. I felt like the most irresponsible parent on the planet for having him there with us, making him sit there, not understanding, as I sobbed uncontrollably.

The doctor came back in a few minutes later and explained the situation. Whenever it was that she said the word "anencephaly" for the first time, I had no idea what it was, but Blake was familiar with the condition.

She went on to explain that for whatever reason, very early on in the pregnancy, perhaps before I even knew I was pregnant, a large portion of our baby's brain and skull didn't develop, leaving whatever part of the brain did develop exposed to the amniotic fluid.

Luke Anderson Wilde, baby with anencephaly

"Is there anything that can be done?" I asked.

"No," the doctor replied. "This is a condition that will not support life and one we generally encourage families to terminate the pregnancy."

Blake, my rock and the level-headed logic to my emotional storm, took over the questioning from there:
Would my body miscarry the baby naturally? No.
Is Whitney's life at risk? No, not any more than with a normal pregnancy.
Will the pregnancy continue to full term if we don't terminate? Yes.
Will the baby be born alive if we carry to term? Most are stillborn and any who do live won't live longer than a few hours at most.

By this point, I was numb. I had no idea what to think, what to ask, what to do. I had so readily declared I wouldn't abort the pregnancy, but I suddenly found myself unsure.

The doctor asked if we'd still like to meet with my regular doctor to discuss things, but we decided to just go home and start to process things, so the ultrasound doctor said she'd be sure to have my doctor call later that day.

My OBGYN's office is on the fourth floor of one of the many buildings that make up UCLA Medical Center, and I swear it has the slowest elevators on the planet. That day as we waited for the elevator to come take us down to the parking level, I stood staring out the window overlooking Westwood with tears streaming down my face. Jack was looking out the window, too, spinning in circles, babbling about something, being the happy boy he always is. He knew Mommy was sad but, thankfully, didn't understand the gravity of what was going on. Seeing him made me smile briefly as we waited, waited, waited the elevator, several other people around watching us because of how obviously upset I was.

As we finally entered the elevator, an older woman I didn't know grabbed my arm and gave it an affectionate squeeze.

"I'm sorry, dear."

She had no idea what was going on, but her simple words, her compassion, were a little ray of sunshine in a day I knew was only going to continue to be hard.

It turns out the traffic had been the least of my worries.

Carrying to term

Our doctor called us a few hours later to check on us and answer any other questions we had, and she explained to us that our baby would not feel pain - in fact, physically could not feel pain - because of the portion of his brain that was missing. She also explained that babies with anencephaly are born blind and deaf.

We chose to carry to term.

We have complete, deep, lasting compassion for anyone faced with a situation similar to ours who chooses to terminate the pregnancy. We will never, ever judge someone who made a different decision than we did.

Ultimately, for us, it came down to the fact that we wanted to meet our baby and for Jack to meet his little brother. We knew it would not be an easy path, but the alternative wasn't easy either, and we just wanted the chance to meet him, regardless of whether he is stillborn, lives for a few minutes or lives for a few hours. We wanted to have that time with him, both in utero and after birth, because we knew it would be the only time we'd get with him for a while.

Luke Anderson Wilde, baby with anencephaly

We are members of The Church of Jesus Christ of Latter-day Saints and believe that a person's spirit - some other people not of our faith might know it as a person's soul - lives on after death, and we also believe that because of promises we have made with God in his holy temple, we will be a family forever. That family includes our baby, Luke. I really do believe I will get to be with him again after this life, but continuing to term, for us, felt right since we knew this would be the only time we'd have with him in this life.

Luke's birth day

Luke's due date was May 20, and as that day approached, we discussed with our doctor what the best course of action would be.

When we first learned of Luke's diagnosis in November, we had initially decided to have a C-section because we thought it might increase our chances of meeting him alive. But as we researched more about it, we realized that even that was no guarantee. Because a vaginal birth is considered safer and the recovery easier (especially with a 3-year-old son to chase around and if we would want to try to have another child sooner rather than later), we chose to only opt for a C-section if it was for my safety, but decided we were comfortable with inducing labor.

Both decisions - to induce and to not have a C-section - were excruciating decisions to make. Initially, choosing not to have a C-section felt like we were choosing Jack and future children over Luke, and inducing felt like we were essentially picking Luke's death date. After a lot of thought and prayer, we came to realize that both of those lines of thought were false, and we accepted the reality that we were just making the best decisions we could in a no-win situation. Looking back, I think all these smaller decisions we had to make along the way were God's way of preparing us to accept the unknown and move forward with faith.

We also made the decision beforehand not to monitor Luke's heart rate during the birthing process. Since we had already chosen not to have a C-section unless it was for my health, monitoring Luke's heart rate and knowing if he had passed during labor wouldn't change his outcome and would instead only make it more stressful and emotional than it already was for Blake and me.

Although the induction and labor process with Luke was very long - about 34 hours - many of those hours were spent in rather uneventful waiting where we tried to distract ourselves and think of his birth as being a day we'll get to celebrate his life instead of mourn his death.

We arrived at UCLA hospital at 2 p.m. on Tuesday, May 19, to get checked in and settled. A lot of coordination and planning had occurred behind the scenes at the hospital before we even arrived, which every nurse on the floor was aware of. You could see the look of recognition on every nurse's face when they realized we were "that" family, but instead of creating an awkward situation, the nurses were all just so kind to us.

After we got settled in, it was a waiting game, with nurses coming every so often to administer medications to induce labor.

Blake and I were able to get a little bit of sleep on and off that night, but not anything terribly restful. Throughout the next day, we tried to take naps but couldn't fall asleep for very long, so we distracted ourselves with "Zoey's Extraordinary Playlist" and old episodes of "Shark Tank."

By 9:30 p.m. on May 20 - more than 24 hours after entering the hospital - I was still only at a 5.

The anesthesiologists came at around midnight to check on things and Blake felt Luke kick around that time. That's the last we know definitively that Luke was alive. We've talked since then about how fitting it was that I felt Luke's first kicks in the womb and Blake felt the last.

We tried to get some sleep. My cervix didn't get checked between 9:30 p.m. until 2:30 a.m. It had taken me more than 24 hours to go from a 1 to a 5, but by 2:30 a.m., I was fully dilated and ready to push.

I don't think I've ever been more nervous in my entire life. This was the moment we had been both looking forward to and dreading for six months and it was finally here. Although Blake didn't show it, he almost passed out as he stood next to me because he was so nervous too, but he stayed strong and encouraged me the whole way through.

When I gave birth to Jack, I pushed twice and he was out. Literally, just twice, so it set some unrealistic expectations for the "push process" to be quick. Although it was definitely not as long as some women endure, I ended up pushing for about an hour, mostly due to the fact that Luke's head could not provide pressure.

Luke was born May 21, 2020, at 3:48 a.m.

As soon Luke was out, I looked at the attending to ask if he was alive. He shook his head and quietly said, "No, I'm sorry, he's not."

Luke had passed away sometime between midnight and 3:48 a.m.

Luke Anderson Wilde, baby with anencephaly

We always knew Luke being stillborn was a likely outcome, so we had tried the whole pregnancy to not get our hopes up. I thought I might be distraught if that were the outcome, and while we were certainly heartbroken, hearing that he was stillborn didn't make us sob. Our hearts were filled with this indescribable peace. It permeated everything.

The fact he was stillborn didn't change anything. Of course we would have loved to have met Luke alive, but at the end of the day, Luke is still our son and will always be our son. And even if he had not been stillborn, no amount of time we had with him alive would have ever felt like enough.

I cried, not because I was sad, but just because of relief because I knew what needed to happen, happened.

Luke weighed 4 pounds 13 ounces and was 17 inches long. He was perfect.

We had been so focused on what wouldn't look right about Luke's appearance that I hadn't put much thought into how perfect other parts of his body would be. I will never get over how absolutely perfect his little hands and feet were. His lips and nose were exactly Jack's lips and nose, his knobbly little knees too.

Blake and I spent the next few hours with Luke, holding and dressing him, soaking in our time with him as I recovered from delivery. Jack picked out the outfit for Luke - a shirt with "baby" on it to match Jack's shirt with "brother." When we weren't holding him, we placed him in a Cuddle Cot, which is a bassinet with a cooling unit in it that helped preserve Luke's body for a longer period of time.

We watched the sunrise together from our room, which had a window that faced out over Westwood. If it were not for one building, we would have had a perfect view of the Los Angeles Temple. Blake pointed out how the sunrise was a perfect metaphor for how this experience has been. It felt so dark in the beginning, but light and happiness slowly found their way in to the point that it's the light that will prevail, not the darkness.

Before COVID-19 happened, we had hoped to have as many family members as possible at the hospital to meet and hold Luke. We wanted our loved ones to have memories with Luke to make the experience feel more real.

But like so many other things the pandemic has ruined, our plan flew out the window. But we were lucky enough to have Jack come to the hospital to meet Luke.

My parents dropped Jack off at 8 a.m. The hospital had arranged a room for us in the basement of the hospital to allow us to be together as a family, and a child life specialist we had worked with came with us to help us talk to Jack and take our family picture. We knew a lot of coordinating had gone into making sure Jack could meet his brother, but it wasn't until later that we learned that Rebecca, the child life specialist, was probably our biggest advocate in making that happen. It was discussed all the way up to the president of the hospital, and Rebecca fought and fought to make sure Jack could be there. We will be forever grateful.

Blake met Jack at the front door and spent a few minutes with him, showing him pictures of what Luke looked like so Jack knew what to expect.

Luke Anderson Wilde, baby with anencephaly

Jack was happy to see Blake and I because it had been a few days since we had seen him. Jack was a little confused, scared and unsure about Luke at first and was more interested in exploring the room a bit than seeing Luke.

But eventually Jack warmed up and wanted to see Luke. Just like us, Jack loved Luke's toes and fingers.

We spent about an hour and a half together as a family and ended by reading "Wherever You Are, My Love Will Find You" - which will forever be our "Luke book" - and giving both Luke and Jack matching blankets that I had crocheted and the stuffed tigers that Jack picked out.

It felt so short, but in hindsight, an hour and a half in that tiny room was the perfect amount of time for Jack. At first, I was a little sad that Jack didn't show as much interest in Luke as I had imagined he would, but then I realized that even if Luke were living, Jack's reaction was pretty standard for a 3-year-old. Jack didn't fully understand what was going on and still doesn't, but as long as meeting Luke was a positive experience for him - which it was - that's what mattered and what he will remember.

After Jack left, Blake and I went back upstairs and spent more time with Luke, just the three of us, until about 2 p.m. We sat on the hospital bed together and just talked, joked and laughed. We were feeling sad, but we knew that Luke didn't want us to be distraught or depressed, so we did our best to be happy.

I think it made Luke happy knowing we were laughing. He always kicked when I would laugh.

We recorded the audio of a bit of our conversation on my phone so we could capture the moment and remember some things to write down later. We didn't say anything particularly profound, but just talked about our favorite memories of Luke.

Luke Anderson Wilde, baby with anencephaly

We talked about how obsessed we were with his hands and feet. Luke had long fingers and feet for how little he was, and he had Blake's toes. He had the cutest pouty little lips and my nose and pasty white skin. He had a little bit of hair on the back of his head that was exactly the same color as mine, Blake's and Jack's.

"He is perfect as he is, because this is exactly what he needed," Blake said at one point.

We felt so much happiness as we sat there. It was definitely a time of mixed emotions, but we talked about how we wanted to try our hardest to think of it not as the day he died, but the day we'll always celebrate him.

"We're going to allow ourselves to be sad, but it will be the peace and happiness that will prevail and we'll remember most," I said.

It was while we were sitting on the hospital bed together that we decided to make a monthly tradition to honor Luke. There were a few foods that I ate while I was pregnant with Luke that really made him dance around: Buffalo wings and donuts. We joked that those must be Luke's favorite foods because he kicked so hard while I ate them, so on the 21st of every month from now on, we will celebrate Luke with Buffalo wings and donuts.

We talked about how much we got to do as a family of four, and Luke was there through it all.

Saying goodbye

Just before 1 p.m., we FaceTimed Jack to give him the chance to see Luke one more time. Jack was so excited to see him and say goodbye. One detail that I never want to forget is how the whole pregnancy, Jack called Luke "baby Luke," but as he said goodbye, he called him "my brother Luke."

It was incredibly hard to say goodbye to Luke and let the nurses take him to the hospital coroners, who would then release him to the mortuary, but by 2 p.m., it felt like the right time. We wanted our memories of him to be before his body started showing more of the natural signs that come with death. We hugged him and kissed him one more time, told him how much we loved and wanted him and how grateful we were for him, then the nurses quietly rolled him out the door.

No amount of time ever would have felt like enough, but the time we did have is a treasure.

We held a viewing and graveside service for him in Utah a week and a half later. We chose to bury Luke in Utah near family, where we hope to live again some day.

Luke Anderson Wilde, baby with anencephaly

Blake and I worked together to write a tribute for the graveside service, which I read. I won't share the whole thing here, but the end of what we wrote sums up so much of what we feel about Luke:

"Now that Luke's mortal life is over, so many of you, and so many others in our life, have asked us how they can help us moving forward. To us, the most beautiful gift you could ever give us is to remember Luke. Remember him when you count your grandkids, your nieces and nephews, your cousins. Remember his birthday. Remember what his life teaches about the Plan of Salvation. Remember his perfect little hands and feet. Remember him when you look at Jack, especially when you see his nose since Luke and Jack have the exact same nose.

"As it says in 'Wherever You Are, My Love Will Find You,' which is the book we read to Luke with Jack in the hospital, remember Luke 'in the green of the grass, in the smell of the sea, in the clouds floating by at the top of the tree, in the sound the crickets make at the end of the day' and as you 'lift your face, feel the wind in your hair' that's Luke, our sweet baby, and his love is right there."

Luke's mother, Whitney, shares more of their experience at www.theartofparenthood.com.



Last updated April 29, 2021