Lyle Bernier

First post: Jun 26, 2022 Latest post: Jul 3, 2022
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Lyle is our first child. My husband, Josh and I (Twyla) , had been trying for over a year and were beyond excited when we found out. I'm 36 so there was a lot of anxiety about trying for the first time. We waited 12 weeks to tell family and friends, just in case. We also chose not to do any genetic testing because we both agreed it wouldn't change us wanting, loving, or caring for this child.

I'm very lucky, because this pregnancy has been has been a very normal pregnancy, I haven't had any health issues, any weird symptoms or pain and I've been able to be active throughout. We thought everything was just going perfectly.

After our 20 week ultrasound, we were referred to Maternal Fetal Medicine for a concerning finding with Lyle's heart. We were worried but were reassured that many healthy pregnancies have this similar finding.

The day came for our ultrasound with MFM, I had overwhelming anxiety and cried before our appointment. During the ultrasound, the techs were amazing but I was getting more worried as it went on because it was taking over 2 hours and the techs were switching out to confirm measurements. At the end they said there were concerns and brought us into a private room and put tissues on the table. We were told by the provider that Lyle's long bones were measuring in the 3rd percentile, his head was irregularly shaped and eyes closely set, kidneys were enlarged, and that there was concern that his chest was small which would interfere with lung development. I broke down and honestly felt myself give up for a period of time. Josh however, remained fiercely positive. We both agreed, whatever the outcome, we will love this child and we are more than capable of dealing with disability. To get more answers and clarity, we decided to get some bloodwork done.

2 weeks later, and 2 days after my beautiful baby shower my mom and mother in law put together we found out our blood test results. Lyle screened positive for trisomy 13, a fatal genetic anomaly which most pregnancies miscarry in the first 12 weeks and those that carry to term most babies pass during delivery or soon after. At this time, I'm well into my 3rd trimester. I remember looking at my provider and crying and asking her "how am I going to do this?" How do I continue on seeing people, working as a nurse and being in your face pregnant knowing this? Knowing our baby that's still alive and moving in me will not make it. Josh came to pick me up and we went home and just cried in bed. We felt defeated.

It's been a whirlwind since then, many decisions have to be made that I wouldn't wish on anybody, like end of life arrangements for a child you were planning to raise and love. We struggle everyday, but we are strong together and will love Lyle always.

After discussions with our providers, we have decided to be induced at 37 weeks as they feel this will lessen our risk for stillbirth and possibly give us some time with him. We will be going to EMMC on Thursday June 30th for induction Friday July 1st.

Thank you for taking the time to read this, it helps to get it out and talk about it. This is our reality that we live everyday. The only thing we need is love, positive thoughts, and prayers.