February 10

Trisomy 18 – How The Death Of My Daughter Has Affected Me



Trisomy 18 – How The Death Of My Daughter Has Affected Me

Do you know how you are sailing through life and then something comes and hits you out of the blue and it doesn’t just stun you, it forever changes you?

That was me.  In 2009.  I’m a different woman now.  Those rose colored glasses of innocence have been replaced with eyes that have cried tears that burned with sorrow.

There are people that live their life with no regrets.  I am not one of those people.  My regrets are not a reminder to live unapologetically, but instead a reminder of how to live a life of love, service and meaning.  When I fall from that, I have regrets.  Instead of letting my regrets stunt my growth, I use them to push me to become better and to become more.

When I think back to 2009 and 2010, I still feel a pain that is so deep it feels like it goes through all parts of my beingness; physical and spiritual.

My daughter died.

When I Stood At The Top Of The World


2008 was a year that I either had or was achieving all of my goals and dreams.  I led a really good life.  My husband of 17 years and I divorced on really good terms and I was stepping into something that I had wanted or so long.

My businesses were thriving and growing beyond my wildest imagination.  I was at the top of my game in wellness.  My 5 children were happy and healthy.  I was heathy.  I felt like everything I was touching was being turned to gold.

I had met someone that I didn’t expect in 2009.  I wasn’t looking for love or relationships but one found me.  It was like a match made in heaven.  If I had one man that was in my dreams consistently since I was a little girl, it would have been him.   I wasn’t looking to get serious but it was serious from the get go.

He told me he used to have visions of me when he was younger.  He was never the type of guy to say something to just flatter.  What he said, you knew was the truth from his perspective.  This is one aspect that made the turn of our relationship especially difficult for me to emotionally handle.

I got pregnant.  Neither one of us were expecting to have more children but I felt the excitement of the expectation of something amazing.  The plans I had laid out before me, I knew were going to have to change. I thought this was another part of the gold I was creating.  I wasn’t too concentrated on where he was at with it all or paid too much attention.


I was always very independent and what didn’t fit in with my circumstances always fell away.  As you hear many people say, “I didn’t have time for that.”  I really didn’t know the depth of what he was struggling with.

I searched around for the best of the best people to care for my baby and I.  I found a midwife at Baylor hospital that was the best.  I still look back and am so grateful for how much of an angel my midwife was during the birth of my daughter.

I went through the regular prenatal testing, none of which I paid much attention to.  I heard the term “advanced maternal age” float around a lot, but I ignored it because I wasn’t even close to being old.

Then I received the phone call.

The Beginning Of The End



It was a phone call that began to change my world.

My midwife set up a genetic appointment for me because the results on one of my tests came back positive.

The day I arrived, I really didn’t have any markers for issues so they felt the test may have been a false positive.  I went in for the level 2 ultrasound to which the baby was visually diagnosed with Trisomy 18.

Incompatible with life.

An amniocentesis confirmed this three days later.

Trisomy is also known as: Complete Trisomy 18 Syndrome, Edwards Syndrome, Trisomy 18 Syndrome, or Trisomy E Syndrome.

I was told by a team of doctors that my baby was incompatible with life and that she would probably die in the first or second trimester.

The tears I cried every day was nothing compared to what was to come.

The Waiting Game

She was smaller than the average baby so I didn’t feel her movements until months later.  Every appointment I held my breath waiting to see if we could hear a heart beat or I would have to face the inevitable.  Everyone prepared me for the moment of her death, or so I thought.

  • The first trimester came and went and the baby held on.
  • The second trimester came and went and the baby held on.
  • The third trimester came and the baby was still going strong.
  • My due date approached and passed on by.  The baby was still happily bopping around.

I spent my pregnancy crying, depressed, and not wanting to face the reality but also wanting that reality to just come and get over with as fast as possible.

I remember vividly standing in the shower day after day leaning against the wall and crying so deeply.  I felt like I was spilling out with my tears.  I would stand there sobbing until the water ran cold.

My relationship deteriorated into a mental game of domination.  As soon as he found out she had Trisomy 18, the games began.  I had no one to turn to and for the first time in my life, I needed someone.

I knew I wasn’t strong enough to go through this alone.  I clung to whatever crumbs he would throw to me.  I felt like I was on a sinking ship and there were sharks all around and every once in awhile someone would throw something at me so I could crawl up on it and get out of the terror filled water for a short time.

I became someone I didn’t know.  I was lost.

I realized what all my independence, capability and strength had given me; I was not surrounded by people that could help me.  Everyone was so used to me being the one that helped everyone else, that I had not built relationships based on giving and taking in a balanced flow.  My world became very dark and very lonely.

The Hope

I had done so many alternative therapies because I was told that the baby could change genetics.  Even though I cried every day, I felt a little hope growing.  It is so rare that a Trisomy 18 baby will make it into the third trimester and here she was past her due date.

My medical team wanted me to stay based in reality.  They had seen this time and time again.

They knew the devastation this brought and they were concerned when I showed hope of her survival.  They would gently remind me that she was going to die.  That she was incompatible with life.

Even though I had a small glimmer of hope, I regret all of the emotions I put on her.  One of my degrees is in psychology and part of my training was in prenatal imprinting.

The mother’s emotions directly impact the baby’s health and wellbeing.  I just couldn’t seem to get myself together enough to feed her anything happy.  My world was a very dim and dark place.

I couldn’t separate out my relationship, the pain of losing a child and being torn between even bringing a baby into the current circumstance.  I was too conflicted.  I wanted her alive but I didn’t want her to bear the pain of the situation.

I had not picked out her name or even prepared for her arrival.  I got myself together enough to start planning for her homecoming and for her life, even though I didn’t even trust how it was going to work out.

The Time of Reckoning



When I was just about 43 weeks pregnant, I was on my way to Baylor and I felt my little angel do a ballerina twirl.  She was such a sweet little girl.  I placed my hand on my tummy because I always wanted to acknowledge her movements.

At my appointment, there was no heart beat detected.  Her last twirl was her good bye to me before she left.

Please watch this video.

I named her Malana, which means light in Hawaiian.  It was so fitting.

Find out why my midwife let out a small shout of victory at the birth of my daughter in the video below…


My Regrets

Where do I begin?  Regrets are only something negative if I don’t choose to do something greater with that information.

  • I regret not pulling myself together to give her happiness while she was here.
  • I regret not planning for her and maintaining that happy feeling of excitement.  I needed to live more of that hope.
  • I regret not feeling happier and grateful for her every day that she was growing.
  • I regret not having her pictures taken.  The image of her little face and body has long left my memory.  I wish I had the pictures to be able to look back on if I ever would have wanted to.
  • I regret not feeling more compassion and understanding for women.  I always felt I understood and got along with men better.  My dad and I had a really good relationship when he was alive so I trusted that.  In doing so, I devalued the power, strength and importance of having women in my life.
  • I regret not being focused in my life on building true relationships.
  • I regret not showing my weaknesses and only my strengths.  I set myself up for a hard fall.
  • I regret thinking I would never truly need others.
  • I regret staying in a relationship that didn’t honor me, my children, and my grieving process.
  • I regret what my children saw me go through and what they went through.
  • I regret not having them come to hospital after she was born to see her.  She never became real to them.  I felt like I was protecting them but instead, I left a small gap in their life.

What I Don’t Regret



There are actually many things I don’t regret about that time and that I am actually very thankful for today.

  • I don’t regret having her.
  • I don’t regret that I chose to continue with the pregnancy instead of opting for a medical abortion, like the doctors suggested.
  • I don’t regret having her naturally.  I am glad I didn’t numb what I felt.  I had no idea a human was even capable of feeling that deeply.
  • I don’t regret my relationship.  It moved me from where I was to where I am right now.

Who I Am Today

As you saw in the video, there are so many ways that she impacted my life and will continue to influence where I go and who I become now and in the future.

I have so much more acceptance, love, and desire for connection than I ever did.  I never want to take someone or something for granted, no matter how long they are in my life.

I want to teach people that no matter how bad a situation is, there is also beauty happening at the same time that we can miss out on unless we choose to look for it.

I believe people should be supported and told that they are worth so much more than how they are currently living.

My business and the choices I have made are because of what I went through.  While I no longer have my rose colored glasses, I am now able to see how people can rise out of the ashes of despair and become something so great.


When my life was easy, it was great.  It also fell a part really easy because I didn’t have the foundational structure I now have.  Because I have pulled myself out of the darkest time in my life, I know how to create success and I know what it takes to help others create success.

The formula is simple.  It really is not rocket science.  I have learned that you have to want to move your life and be willing to step into the unknown.  You need to draw on your pain to get you to a life that is not only extraordinary but built on something solid.  When you have a solid foundation, success in all areas is easily repeatable.

It doesn’t matter if you want success in health, wealth or relationships.  Success is a scientific formula and that is why it has often been described as the science of success.  There is an exact formula that you can follow.

You only have to be willing to shift your perspective a little bit and allow your pain to become the thing that makes you extraordinary.  The fact of the matter is that other people are depending on you to share what you have learned.

You can begin to do that by following the same exact formula I did.  Click the banner link at the bottom of this page to start the process.

I want to hear your pain and struggles.  How can your pain help you?

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About the Author


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  1. Pingback: Michael's Mommy
  2. Thank you so much for sharing your story it really ment alot to me i just lost my baby in October he was 5months they said my body just could not hold the baby…i appreciate this because even tho our situations are different our emotions were The same. ALL this time i have been in a dark place with so many regrets thinking i could not talk to any one or that no one would understand but your story gives me so much hope God Bless you you are a strong woman


  3. 2009 was the year we were touched too. Our angel, Jennifer Lynne was born alive with Trisomy 18, just 3.5 lbs at term, and told too small to find a new heart. Testing was missed by traveling between two countries. I knew something was wrong at 6 weeks; I started with the same symptoms of the previous four pregnancies, losing three before.
    The MD said everything was fine. No one would listen, despite my medical background. I trusted the OB/GYN in US – who I had previously worked with. But, the test was not offered or done, despite my age or history. I was the patient and not functioning or thinking as a professional. State side OB said, “It will be a small baby,” continue to stay on bed rest and you will be fine. However, I knew it would not be. I was smaller than others were at this time in pregnancy. I returned to Canada where grave faces met me at 37 weeks, whirled me through ultrasound testing and still not given any answers. “Everything would be fine.” However, would it?
    I was alone, my husband had returned to our business waiting for what would be “many hours” until delivery. As soon as he left, everything went to chaos and rushed for C-Section when her heart rate dropped gravely. I was alone and knew my daughter would not survive. What do you do?
    2 days later, I was hanging on to life by a thread, with a massive systemic infection and too weak to go see my daughter. Sadly, to complicate the situation, Jennifer contacted chicken pox virus and she lost her struggle at 20 days.
    We know your pain. Yes, an angel touched us.
    Yes, our lives changed forever. Life is precious.
    We continue to live our lives to share and be passionate in our business making other peoples lives have meaning, and make lasting memories.


  4. What an amazing story Kelly! Thank you for being so transparent. I felt your pain that brought emotion to my heart & in the same story I seen hope & recovery. What a blessing you’ve are♡


  5. :::softly and wiping tears::: Thank you for re-living all those moments to share with us…with the world.
    Thank you…for sharing Malana with us.



  6. Wow Kelly…amazing and beautiful story. Your daughter is shining her light on us through you and it is a lovely light. Thank you for sharing her story and impacting all of us who read your article here. Love. 🙂 <3


  7. Kelly, it took true strength to share these moments of your story.
    I commend you and am inspired by your courage to share this impactful part of your life.
    You will touch many many people with this post.
    Thank you so much for sharing!


  8. Touching, so powerful to share these intimate moments. I cry each time I read it as I totally relate to you as I too went through a divorce after 14 years of marriage and experienced similar examples. You have made me such a more powerful and stronger women learning your story and your triumph in your success. You touch so many, thank you!


  9. Hi Kelly, very profound and inspiring. It is a lovely and touchy story with an amazing lesson behind it. Your daughter is a very special being, that came into this world for a very short time with a great purpose. That was her decision she took as divine being before coming to this world for her soul to grow and move forward….

    You are a blessed and loving person with a very special mission her on earth. Thanks for sharing your story….much love.


  10. Kelly, what a powerful story! I am so sorry for the loss of your little girl. Although you did an amazing job vividly describing this sorrowful time in your life, I can not truly imagine the pain you must have been feeling. I am so thankful that you used that pain to propel you into your greater self! You are strong and courageous!

    In our culture, we are taught to not have regrets however, I truly believe it is how you reframe your circumstances and you seem to use them in a positive way. Keep sharing your story to inspire others that have pains and struggles that seem unbearable. 😉


  11. Hey Kelly, thanks for sharing your story.

    As a parent myself, I can’t even begin to imagine what you went through. Not just with Malana, which in itself was clearly so difficult to go through, but with the relationship struggles too.

    I admire you so much for continuing with your pregnancy, despite what the medical experts were saying. I would have done the same thing if I were in your shoes (obviously, as a guy that’s pretty difficult!). Because at least you know that you gave her a chance…you didn’t give up on her. If you’d have gone the other way, you may well have always been wondering…what if. You gave her a shot. At least that’s my perspective anyway.

    “…allow your pain to become the thing that makes you extraordinary.”

    That, right there, is as powerful as it gets.

    You indeed are extraordinary.

    Much love, Lee.


  12. Powerful. The courage you and to forego the medical doctors and truly follow your heart is heart wrenching, but with such great fortitude and courage you had. Life is valuable and you help sustain that in your little girl. It was an honor to read and listen to your video–thank you for sharing.


  13. This post got to me, it really did. My mom brought me up on her own and I cant even imagine life being without her. I cant even begin to fathom how hard it would be to lose family.. and the strength you need to get yourself back up again. Thank you for reminding me that we should always live life to the fullest. Thanks for sharing this.


  14. Wow…

    Even though I have heard your story, you took it to a whole new level here on this post.

    How many babies are diagnosed with Trisomy 18? You are such a guiding light to the other mothers out there who are struggling with this…

    It’s a powerful reminder to never take life for granted….

    Thank you for being so brave to speak out about yor experience.


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