Ashley – We’re Not Giving Up

March 13, 2022

It’s hard to remember a time before the excitement and joy that accompanies pregnancy, was stolen from me.  It has only been a couple years since our lives changed forever, but so much has happened and I barely recognize my new cautious mindset.

During the summer of 2019, Bryan and I found out we were expecting baby #2.  Our son Charles was a year and a half at the time, and we were overjoyed to know that our kids would be two years apart, as planned.  Everything was planned.  I had even planned the timing of our first, a fall baby, so that I wouldn’t miss a slo-pitch season.  March 19, 2020 was the due date and everything was falling into place.  I knew that not everyone can get pregnant so easily (and go through pregnancy so easily) and I was feeling like the “mom life” really was the life for me.      

At 20 weeks we went for an ultrasound, but we were told that the baby wasn’t cooperating and we’d need to come back in a couple weeks.  That turned into a fetal assessment and the worst day of my life up to that point.  The doctor there set me up with a genetics specialist that same day and it was determined our baby likely had hypophosphatasia; a genetic condition which affects the bones and is fatal upon birth.  After a few weeks of tests and more scans, the condition was confirmed. I really don’t remember much of the events of that time, but rather the feelings:  

• So much sadness. 
• Grief for all the plans we had already made for our son. 
• Gratitude for the circle that formed around us in our time of need and for Charles, who was blissfully ignorant of the situation but so in-tune with our feelings all at the same time.
• So much love for our unborn son.
• And finally hope for the future…  

On December 29, 2019, at 28 weeks gestation, David William entered the world with a heartbeat, but did not take a breath.  The nurse wrapped his tiny 3lb body in a blanket and we were allowed to hold him for as long as we wanted.  My research told me that you should take pictures because otherwise you’ll regret it.  So, we took pictures of a moment in time we did not want to remember, and I’m so glad we did.  Take the pictures, as awful or awkward as it may feel in the moment.

There were some things about this time that I didn’t expect, such as the deep connection I still felt with my son even after he was born.  Or all the postpartum symptoms you still have to deal with everyday, as a cruel reminder of what you have been through.  Or how I wanted to talk about David all the time but also didn’t want to talk about it.  Figure that one out. 

We put his memory box in a closet but have a few things out on display as a daily tribute.  Having people acknowledge our loss and just be there for us in their own way was so comforting at the time, and even now, if someone mentions David to me I feel like he hasn’t been forgotten. He is still a part of our family.

During my recovery I met with a genetics counselor to discuss future options, such as IVF.  There is only a 1 in 4 chance of each pregnancy being affected so we felt comfortable conceiving naturally again.  I’ve said it many times; I’m taking the 75% odds in Vegas every time.

It took about a year for us to be ready to try again.  There were many ups and downs, times I felt I was ready, and times I didn’t think I’d ever be able to have the courage to try again.  There were times we were optimistic with the odds, and times we just knew it would happen again.  We passed David’s due date, then Charles’ 3rd birthday.  They were just the beginning of a list of important dates that fill my head now.  Right around the first anniversary of David’s birth we confirmed our 3rd pregnancy.  This baby would be due in September 2021.  This would also be the first baby we weren’t 100% excited about.  The pure happiness we used to feel with a new pregnancy was replaced by regret, anxiety, uncertainty, and at times a sprinkle of cautious optimism. 

We didn’t tell anyone about this pregnancy.  I thought if I could keep it a secret until closer to the ultrasound, we, and the people around us, wouldn’t have as much time to get excited before having our hearts broken again.  We really wanted to be happy, but the scars of the past were reminding us to shield our hearts.

In February, 10 weeks along in the pregnancy, I started bleeding one day at work and by the early morning hours I knew I had miscarried. Talk about mixed feelings.  I was so busy worrying about hypophosphatasia that a miscarriage hadn’t even crossed my mind.  Losing Baby E in this way was quicker and, in some ways, less painful but miscarriage is so lonely.  We had been so open about David, but here we were dealing with the loss of pregnancy that no one else in our lives knew about.  I felt like God was really putting me through my paces and teaching me lessons that one day, I hoped, could be used for good.

Things changed after that.  We had made it through so much and were still standing so it just felt right to go with the flow, let go of anxieties, and trust that we will continue to be held up through whatever comes our way.  We have accepted that the risk of loss is greater for us but it is just our unique position and it will never change.

Pregnancy #4. Due March 13, 2022.  It’s coming up quickly, two weeks from when I am writing this.  Early in this pregnancy I decided that it was time to have some good come of all this and I started a personal blog to reflect, hopefully raise some awareness, and let others know they are not alone.  I know how important that has been for me.  It has been so rewarding to hear from others who have been inspired to share their stories after reading mine.  And surprisingly therapeutic putting my thoughts on paper.

Early in this pregnancy I also got to experience legitimate morning sickness for the first time.  That was different for me.  For that reason and our new optimistic outlook, we didn’t make an effort to hide the pregnancy and announced it to people as we saw them.  10/10 would recommend.  I never want to regret not being excited about my baby ever again.  Don’t get me wrong, we can’t fully commit to being hopeful and joyful all the time.  When we would get asked if we’re finding out the gender I would say “No, we’re finding out the health status”.   But cutting out most of the worry has made this a much easier experience.  

One small victory came when we made it to the 2nd trimester.  But I had a bad feeling when the ultrasound was scheduled.  It was deja vu because David and this baby’s due dates were in the same week of March and timelines were lining up so closely.  The memories from two years prior came flooding back in a hurry.  Except this time, I would have to do it alone due to the pandemic. 

To make a long story short, the ultrasound was also inconclusive and again I had to schedule a fetal assessment.  However, this time, a couple days after the ultrasound my family doctor gave me the news that this baby did have deformities consistent with hypophosphatasia.  I think I already knew the answer going into that appointment. 

We went through an abbreviated version of all the tests and appointments, and I got induced on November 8 at 22 weeks, the day after Charles’ 4th birthday.  Henry Jacob was stillborn weighing in at 1lb, and again we got to hold him and take pictures of him in his Angel Dress.  His ashes will be spread with other babies at a ceremony in May.

It’s so sad to realize that we recovered from this ordeal like it’s old hat.  Been there, done that.  I never imagined I would lose one baby, let alone three.  And all while raising another child, who has been a major blessing, but at the same time it’s been hard navigating the toddler years through all the pain, knowing he’s being affected by our emotions. And not knowing how or when to tell him about his siblings.  Not knowing how to tell him that the siblings he keeps asking for exist, he just can’t play Lego with them.

At the end of the day, I think it’s important to acknowledge every loss and promote a culture that allows everyone to speak about their losses openly if they so choose.

We’re not giving up.  “Never let the odds keep you from doing what you know in your heart you were meant to do” -H. Jackson Brown, Jr. 

-Ashley G

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