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HLHS- The Story of Layla Hailey Klar

HLHS- The Story of Layla Hailey Klar

On the morning of November 20, 2018, I drove to the hospital to deliver my baby; a baby I knew I couldn’t bring home.

To the shock of both me and my husband, I got pregnant on our very first try. He had wanted to wait a little longer to start trying, but I said all of the things one might say when trying to convince their partner that it has to be now. “It never happens on the first try,” “we will never really feel 100% ready,” or “you don’t know what could happen, miscarriage is extremely common in the first 3 months…” and so he agreed, with us both believing it would probably take a while.

But I didn’t experience the disappointment a woman feels when she gets her period month after month. I didn’t experience the fear and anxiety that comes after that; I had never yet wondered if I could get pregnant or not, or if my body could carry a baby or the hundreds of other things that could cause infertility. We decided we would go for it, and my very first pregnancy test came up with 2 pink lines. I thought that made me one of the lucky ones.

I found out I was pregnant while he was away on a canoe trip, completely off the grid. I didn’t even have a way of telling him until he got home. I was so excited that I immediately ran to a nearby kid’s clothing store and picked out a tiny pair of shoes (the pair in the photo) to put at the front door for his arrival. I couldn’t wait for him to get home and see the look on his face when he discovered them and put the pieces together. We were going to have a baby!

The next four months went by as smoothly as they could, but there was always something in the back of my mind telling me that something was going to go wrong. I thought it was just normal anxiety pregnant women get, so I mostly ignored it. Whenever I would tell someone I was pregnant, for some reason, it always felt like a lie, and I didn’t know why. But aside from some mild nausea, I breezed through the first trimester with perfect ultrasounds and checkups; we were in the clear. It is so much easier to believe that everything is going to be okay.

I was so naïve.  

On November 8th, we walked into our routine 20-week anatomy scan almost giddy. We couldn’t wait to see how much the baby had grown, to guess who he or she looked like, and to get new pictures to show our family. We made sure the technician told us to look away when she checked to see if it was a boy or a girl- we were eager to know, but were excited to have the most amazing surprise in a few months when our baby was in our arms.

We laughed when the baby wouldn’t turn around for the technician to get a clear picture of their heart. I ate a Kit-Kat and jumped up and down and the baby still wouldn’t move. We joked about how lazy it was. To the naked eye, the baby looked perfect. The technician told us that we would need to come back in a few weeks to try again to get all of the pictures they needed.

We made an appointment for 2 weeks later and left, not thinking that by the time the next appointment rolled around, I wouldn’t be pregnant anymore.  The fact that something was wrong never even crossed our minds.

It was around 3:00pm that day when the phone rang. “Unknown Caller ID” appeared on the screen so I knew it was the hospital. “Oh, it’s just my OB calling to tell me the ultrasound looks good”, I remember thinking. But I never got to hear those words.

“We’re worried about a heart problem.”

“Sorry, what?” I thought I misheard.

“The left side of the heart ventricle seems to be narrowed and we can’t see the aortic arch. We are concerned about the baby having Hypoplastic Left Heart Syndrome. But don’t panic. Don’t google anything, I don’t want you to freak out yet. We will know more after your fetal echo.”

We said goodbye and I burst into tears. I called my husband to come home from work. We tried to stay optimistic but deep down I think we both knew that something wasn’t right.

A few days later, we walked into Sick Kids Hospital where they would perform the fetal echo. I remember trying to stay positive that morning. I blasted “Walking on Sunshine,” from the speakers and danced around the kitchen. “I’m feeling good,” I told my husband. I was doing anything to convince myself that it would be good news. I hoped so badly that they were wrong.

Waiting for the results of the fetal echo was agonizing. My mom and my husband waited with me at a table in this tiny, sterile room, just trying to pass the time. On the table sat a Kleenex box and a 3D model of a heart. Kleenex, bad sign.

It was only about an hour, but it may as well have been a year. “Why are they taking so long?” I ran through scenarios in my head as to why they may take longer to deliver good news. I wasn’t very convincing.

Finally, a cardiologist, an OB-GYN, a resident, and a nurse walked into the room. I wish that was the start of a bad joke, but all I could think was, they never bring in this many people to tell you good news. The cardiologist started by giving us some speech about the manner in which she would present the findings to us. My husband snapped at her to spit it out, we just wanted to know what was wrong. The words that came next were the words that would change our lives forever.

“Your baby has a very complicated heart.”

That was all I needed to hear before the room started spinning. She started to explain that the baby had a severe form of Hypoplastic Left Heart Syndrome with aortic atresia/mitral stenosis/ probable coronary sinusoids and most importantly, a restrictive atrial septum.

I had no idea what any of that meant. I couldn’t focus on what she was saying, it all sounded like gibberish to me, like the voice of the adults in Charlie Brown. I tried to focus. She started to explain all of the major heart surgeries the baby would need to save its life, starting at 1 week old, and how we would likely be spending a lifetime in hospitals, and couldn’t expect our child to lead a full, normal life, that is if they were even lucky enough to make it past each stage.

The odds were stacked against us. She finally explained that even if we were to intervene in utero, the baby would only have a 10% chance of surviving birth, and even if it did, they weren’t sure how much longer after. In all likelihood, all of those operations wouldn’t even be an option for our baby, because they wouldn’t live long enough to make it to one.

“In cases like this, many women choose to terminate the pregnancy.”

With a 90% chance that my baby wouldn’t even make it through birth alive, I didn’t need to hear any more to make a decision. I was going to have to end my pregnancy.

“If that was the option I chose, how would that happen?”

“You’d have to deliver the baby.”

I couldn’t breathe.

The thought of having to go through labour and delivery to go home with empty arms was absolutely agonizing to me. This was my first child. The first time I would ever deliver a baby would be to a child I knew I didn’t get to take home with me. A child I would have to bury. A child I would never know.

I went home and cried for days. It would be another week before I would go into the hospital to deliver. Another week for me to feel my baby moving inside of me. I was living a nightmare.

Finally, on November 20th, 2018, 12 excruciating days after that first anatomy scan, I went to Mount Sinai Hospital to give birth to my baby. I was 5 months pregnant.

I got to the hospital around 8:00am and was met by the most incredible doctor in the world, the head geneticist at the hospital. He took me up to the delivery room through a private back route so I wouldn’t have to encounter any other pregnant women on my way up.

I entered what is known as “The Butterfly Room,” named for the photograph of a butterfly on the door, where those in situations like mine go to deliver their babies. I was soon met by a social worker who checked on both mine and my husbands’ mental wellbeing and told us she would be there if we needed her at any point.

In the worst of situations, the care I received was a tiny bright spot. The hospital, nurses, doctors, social workers, genetic counsellors and the whole support team were absolutely incredible and I am forever grateful for them.

The trauma of that day is too much to relive, and something that I keep between those who were there with me, my incredible mother, husband, and sister.

It took almost 14 hours, but at 12:19am on November 21, 2018, I gave birth to my daughter, Layla Hailey Klar, who was born sleeping. She was born only ever knowing a life of love and I find peace knowing she will never have to feel pain. We carry that pain for her.

I think of her and miss her every single day. I wonder who she would have been, what she would have looked like, what she would have loved…. I wonder what my life would look like had she lived. I wonder why this had to happen to her, why couldn’t we have saved her, why her heart didn’t grow as it should have.

And then I look at my son, my rainbow baby, and am so grateful he is here with me and I feel guilty and relieved all in the same breath. I like to believe she sent him here for me, hand selected by his big sister. She is our angel now. As long as I’m living, my baby she’ll be.

This guest post was submitted by Allie Klar in honor and remembrance of her sweet angel, Layla Hailey Klar.

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