Lisa

Luke Hudson, January 19, 2011

 Baby Hays, July 5, 2011

Austin, TX

 

I am the face of Thanatophoric Dysplasia and Early Miscarriage

It’s so difficult to share the story of loss.  No words seem to do it justice.  Here’s my attempt.

In the fall of 2010 we learned I was pregnant after nine months of trying for our second child. The pregnancy progressed just as nicely as the first. But, 19 weeks into our pregnancy, everything changed.

On January 18th, 2011 we were scheduled for our 19 week ultrasound. The initial screening appeared fine. We saw a strong heartbeat and properly developing brain. After that I wasn’t concerned with anything else except for the gender of my squirming little baby. The nurse then revealed that we were having a boy! My husband and I were both pleasantly surprised. That excitement wasn’t dampened by the next set of words that would ultimately change our lives forever. “I’m going to have the doctor complete the ultrasound…the limbs look a little short.”

The doctor arrived and began the ultrasound. He then revealed the life changing news. The limbs of the baby were about four weeks behind schedule. I knew this growth lapse was critical. After a period of silence the doctor shared his findings. The baby’s arm and leg bones where short, and the thigh bones, in particular, were severely bowed. The chest was bell shaped when compared to his abdomen. The doctor suspected Thanatophoric Dsyplasia, a very rare skeletal disorder that is uniformly fatal upon birth due to respiratory insufficiency. And, just like that the “fun” appointment turned into one of the worse days of our lives.

Our options were few on how to handle the situation. In my mind I couldn’t fathom carrying this child another 20 weeks just to lose him after delivery. We prayerfully decided to terminate the pregnancy. Within 24 hours our son was on his way to Heaven.

I was scheduled for induction on Thursday, January 20th. I could not understand how I was supposed to deliver an angel. Entering the hospital felt almost shameful; I was so disconnected from this child. But, God is good and he blessed me beyond measure. It took 24 hours before I went into active labor. During that time we were finally able to get a handle on what was happening. It is truly the first time I connected with this baby, who wasn’t just a baby, but my son.

Luke Hudson was delivered at 6:45 A.M. on Friday, January 21st, 2011. He was nine inches long, weighed 10.3 ounces and was absolutely beautiful. How could I have ever been afraid of this baby that I was now so madly in love with? I actually questioned if we had made a mistake as I didn’t notice the skeletal deformities present. I think that’s just a mother only seeing perfection in her child.

The hospital staff was amazing and they treated Luke with such dignity, just as if he were alive. They carefully wrapped him in a blanket and placed him in a tiny bassinet. We were given ample time to hold and love him. I treasure his tiny foot and handprints. I’m so thankful for the thoughtfulness, love and support shown by the staff.

That afternoon it was time to say goodbye to our son. Even though he was already living as an angel in Heaven, it was so very difficult to leave him. We left with empty arms and a broken heart.

Compelled to be pregnant again (after all, wasn’t I still supposed to be), we began trying for another child three months after losing Luke.  Each month proved heartbreaking when I learned I wasn’t pregnant.  But, our third month trying proved successful.  I learned I was pregnant the week I was due with Luke, and appropriately it was also Father’s Day weekend.  I felt it was God’s perfect timing.  Unfortunately, God again had a different plan for us.  On July 5th I noticed light bleeding.  I immediately thought the worst.  Surely, after all we’d just been through, I wouldn’t have another loss.  I went to my OBGYN’s office for blood work.  On my way out I decided to use the restroom, which was the best decision I could’ve made.  That is when I noticed the blood again, but this time it was bright red, the color of a pending miscarriage.  I immediately asked to see a doctor (mine was out that day) and while it was still early (6.5 weeks) the ultrasound did not find “what we should be seeing this far along”.  I was miscarrying.  They couldn’t deem this a viable pregnancy.

I learned that it doesn’t matter if it’s 6.5 weeks or 19 weeks, it all hurts.  Losses shouldn’t be minimized at any gestational age.  These are our babies, our sons and daughters.  There’s not a day that goes by where I don’t reflect on our losses.  The one year anniversary of Luke’s “angel birthday” is quickly approaching and it scares me to death.  I can’t believe it’s almost here.  The words, the heartbreak, the memories, they’re all on my heart as if they happened yesterday.  I wanted to share our story in honor of him and his upcoming anniversary.  I love you, Luke!!!

Lisa can be reached at Lisa@LukeLivesOn.org & www.lukeliveson.org.

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Comments

  1. Sharon says:

    Your story sounds so similar to some of those in my heartbreaking choices support group. We like to say we did it out love, we as parents take the pain for our child because that’s what parents do. I’m sorry for your multiple losses. Heartbreaking choices and miscarriage steal our innocence about pregnancy. Infertility just adds to the disappointment. I suffer from all of them as well. Starting your box donation is a wonderful thing to do, your unfortunate experiences are not “all for naught” if you can do something positive with your loss and help others in time of need.

  2. Megan says:

    Lisa…your story sounds so very similar to what I just experienced a couple of weeks ago. We were making that terrible heartbreaking decision to terminate when the baby passed naturally due to an amnio. I am trying to look at it as a blessing so we didn’t have to go through with a termination. I feel your pain and please know I can’t stop reading your story. It helps to know I’m not alone.

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