Heather

Mom to Everett

Born sleeping February 10, 2012

Wakefield, Rhode Island

Before his delivery date, my son had everything he could possibly need. We made sure he was registered for the car seat with the highest safety ratings.  We chose organic cotton onesies that were softest to the touch.  We even had the warming machine for the wet wipes.  Sisters were knitting hats, friends were making quilts, and grandmothers were already decorating the nursery in their mind’s eye.  Finally, he had a name.  Believe it or not, it came to me in a dream.  Maybe he told me himself – his name was to be Everett.

The morning after my dream, I told my husband about Everett’s name.  He loved it. We were so excited!  We were ready to meet him.  Little did we know we would meet him so soon.  That day, the day after my dream, I went into preterm labor.

I was rushed to Women & Infants hospital.  I was given medication to stop the labor and to increase Everett’s brain and lung function in case he was born early.  The nurses were caring and attentive, and the doctors were some of the most respected in the country.  Everett was getting the finest care possible.

Once my labor stopped, the doctors told me to just hold on for 48 hours.  This would give the treatment time to take effect.  After six and a half months of wishing time would hurry up, I was begging time to slow down.  “Please stay in there!” I kept telling Everett, “we’re not ready to meet you just yet.”

Tuesday at 5 o’clock came, and he was fine!  We had increased his chances of survival.  He was so strong!  Wednesday came and went and all was still ok.  We had our family and friends sending word that they were thinking of us and praying for us.  We were strong and we would make it.  Thursday morning was great and our spirits were high.  I was even enjoying the hospital food – the chocolate cookies were delicious.

Thursday afternoon was when we heard the devastating news.  They could not find a heartbeat.  Our son was gone.  He would no longer need a car seat or a crib or a knit hat.  He no longer needed the best medicine or the smartest doctors.  He didn’t even need me to eat cookies for him anymore.  When we met him later that night, he was beautiful.  He had my husband’s nose and my big feet, and he was perfect.

In the weeks that followed, my grief was unimaginable.  I found that I wanted to tell everyone about my son, but I held back, understanding that such a sad story is not always welcomed.  I learned, however, that there are many people who have similar stories to mine.  Whether the grieving parents called their babies they lost simply “baby,” or had a name picked out at conception, I believe that acknowledging them by name is appreciated.  Although it is not a tangible object, Everett’s name is the most important part of his memory.  It encompasses all that he was and all that he could have been.  Everett is our son.

*

After writing the essay above, my husband and I learned what happened to Everett.  His heart never formed correctly from the beginning.

He had multiple “major” congenital heart defects. The doctor’s theory was this: because the valves did not operate properly, the blood was getting backed up into the placenta. Due to this, the placenta got heavier and thicker than it was supposed to be, which led to it tearing away from the uterus, which caused the blood clot and then the preterm labor.  Then, since he was not getting any blood at all after that, his heart gave out and he passed .

Here are the details :

1) HLHS – this is the major defect he had.  It affects 3-4 in 10,000 “live births.” This basically means the left side of his heart did not develop at all.

2) Bicuspid Aortic Valve – His aortic valve only had 2 “leaflets” instead of 3

3) Aortic Stenosis – his valves did not open and shut all the way.

The good news – he didn’t have any other abnormalities at all – he was perfectly healthy, and my placenta was also perfectly healthy. Sometimes physical abnormalities can occur with HLHS, but he didn’t exhibit any of them.

Also – what causes these heart defects is unknown.  It is probably a genetic mutation, but there is no test for it yet.  We should be able to try again.

My husband and I have faith that we will have a healthy baby.  We miss Everett every second of every day, but we are also so grateful for the strength he gave us, and we are so blessed to have had him in our lives!

Heather can be reached at Heatherbiben@hotmail.com.

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Comments

  1. Jessica says:

    Heather,
    My son Jacob Austin was born still also on February 10th after passing away Thursday. I will never know what caused him to pass away, other than a possible infection. My water broke at 21 weeks -. I was hospitalized for 3 weeks attempting to save him. I’m so very sorry for your loss.. I understand completely being sad about not being able to eat chocolate cookies for your angel, I was overly aware of what I ate, after Jake was born. It was like an ugly reminder that it no longer mattered what I ate, my angel wouldn’t benefit. Feel free to visit my blog at http://www.stillloved.blogspot. com or read my story here on faces of loss. :) You’re in my prayers!

    • Heather says:

      Hi Jessica, thank you for your prayers! What a sad coincidence, that we lost our boys the same day! And, we almost name Everett Jacob , too. I love that name. They must be playing together in heaven right now :)

  2. Tarni says:

    I am so sorry for you loss of your lil boy Everett. I lost my little girl Ava at 41 weeks, althought there was no cause for her death I was paranoid all the way through her pregnancy about her having a congential heart defect as I have 2nd degee heart block myself. I am so sorry your lil boy isnt with you today. I have to say about the cookies thing you wrote .. I just finnished eating a ham sandwhich and although it was delicious i hated it, i never ate ham when pregnant because of the risk of listeria so i do understand its funny the things we do after our lil angels are born that we secretly hate because if they were here we wouldnt be doing them. Takecare if you need to chat one day my email is on my story. xx

    • Heather says:

      Hi Tarni – I still cringe when I eat coldcuts or drink coffee or do anything that i didn’t do while pregnant. Thank you for your support , and all my best to you!

  3. Andrea says:

    Heather, I am so very sorry for the loss of your beautiful baby boy, Everett. My daughter, Ava, was also born sleeping in January. The pain is unimaginable and I hate that any of us have to experience this. I will be sending thoughts and prayers your way. Thank you for sharing your story.

  4. Hannah says:

    MY son Everett was stillborn as well, 37 weeks -3 years ago. GREAT name. Keep telling everyone about your son – my son changed my world forever , I like that about him.

    HH

    • Heather says:

      Hi Hannah – isn’t it a beautiful name! I am sorry for your loss, I am glad to see that you are still talking about your son to this day. We will never forget!

  5. candice says:

    my son also died of heart problems…he lived only five days…i had to make the decision to take him off the vent and stop the medicine…i took him home on march 2 2012 and he passed away in my arms march 3….he had 17 things wrong with his heart…i can totally understand what you r going through…i talk about my son Avery Dean all the time…i have pictures all over my house of him…i hope both our angels are having a good time up there….

    • Heather says:

      Hi Candice – I’m so sorry for your loss. Avery Dean is such a strong name! I too hope that he and Everett are playing together :)

  6. Fran says:

    I was reading your story as I try to cope with the news that my brother and his wife just lost their little son to stillbirth at 37 weeks.

    I am sure your little Everett shared his name with you. I think our little kids are close to us in spirit, even when they’re not born yet, or when they’ve gone on. I lost a child at 11 weeks.

    I also have a nephew who was born with HLHS. We’re glad he’s made it this far (9 years old) but he was literally on the brink of death about 3 times during his first 2-3 years of life that he basically spent in the hospital. HLHS is a beast of a heart defect to deal with. I’m sure Everett gave it his all to make his little heart work. But those defects are no joke.

    I’m glad you’re sharing your story, and letting us know about Everett.

    • Heather says:

      Thank you so much Fran – I’m so sorry for you and your family. I truly appreciate your kinds words, and I wish you all the best in the future!

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