What is Trisomy 18?

Facts and statistics about Trisomy 18:
-Occurs when there are 3 copies of the 18th chromosome (instead of the normal 2) in every cell of the body
-Occurs from spontaneous meiotic nondisjunction – meaning the chromosomal abnormality is not inherited nor is it a result of something the parents did or did not do
-Occurs in 1 out of every 3,000 live births
-95% of Trisomy 18 babies die in utero
-Of infants born with Trisomy 18 50% live to 2 months, 5-10% make it to be one year old
-The average life span of a baby born with Trisomy 18 is 5 to 15 days
-A baby can have full, partial or mosaic Trisomy 18 – I am focusing only on full Trisomy 18 which is what Hailey had
-Most Trisomy 18 babies die from apnea or heart problems

Some of the characteristics of Trisomy 18 include but are not limited to:
-Heart defects (Hailey did NOT have – other than a murmur)
-Apnea / Breathing problems (Hailey had this)
-Intestines protruding outside the body (omphalocele) (Hailey had this)
-Growth deficiency (Hailey had this)
-Feeding difficulties (Hailey had this)
-Low-set, malformed ears (Hailey had this)
-Cleft lip/cleft palate (Hailey did NOT have this)
-Clenched hands (Hailey somewhat had this)
-Underdeveloped thumbs and or nails (Hailey had this)
-Webbing / extra skin (Hailey had this)
-Small facial features (Hailey had this)

Disclaimer: I do not list these as being 100% accurate nor do I remember the sources behind all of the information posted.

Trisomy 18 Foundation: What Is Trisomy 18

Heaven is the Face

“Heaven is the Face” by Steven Curtis Chapman (Written after he lost his little girl last year). I first heard this song on an early morning news show one morning when I was up with Hailey feeding her. We had someone play it at her memorial service. I couldn’t have picked better words to describe how I feel about losing her… I starred my favorite lines of the song.

Heaven is the face of a little girl
With dark brown eyes
That disappear when she smiles
Heaven is the place
Where she calls my name
Says, “Daddy please come play with me for awhile”

God, I know, it’s all of this and so much more
But God, You know, that this is what I’m aching for
God, you know, I just can’t see beyond the door
So right now

Heaven is the sound of her breathing deep
Lying on my chest, falling fast asleep while I sing
And Heaven is the weight of her in my arms
Being there to keep her safe from harm while she dreams

And God, I know, it’s all of this and so much more
But God, You know, that this is what I’m longing for
God, you know, I just can’t see beyond the door

But in my mind’s eye I can see a place
Where Your glory fills every empty space
All the cancer is gone
Every mouth is fed
And there’s no one left in the orphans’ bed
Every lonely heart finds their one true love
And there’s no more goodbye
And no more not enough
And there’s no more enemy
No more

Heaven is a sweet, maple syrup kiss
And a thousand other little things I miss with her gone
**Heaven is the place where she takes my hand**
**And leads me to You**
**And we both run into Your arms**

Oh God, I know, it’s so much more than I can dream
It’s far beyond anything I can conceive
So God, You know, I’m trusting You until I see
Heaven in the face of my little girl
Heaven in the face of my little girl

A Child of Mine

I’ll lend you for a little while
A child of mine, God said
For you to love the while she lives
And mourn for when she’s dead

It may be six or seven years,
Or forty-two or three
But will you, till I call her back
Take care of her for me?

She’ll bring her charms to gladden you
And – should her stay be brief,
You’ll have her lovely memories
As a solace for your grief

I cannot promise she will stay
For all from earth returns
But there are lessons taught below
I want this child to learn.

I’ve looked the whole world over
In my search for teachers true
And from all beings that crowd life’s land
I have chosen you

Now, will you give her all your love
Nor think the labor vain.
Nor hate me when I come to take
This lent child back again

I fancied that I heard you say
“Dear Lord, Your will be done.
For all the joys Your child will bring
The risk of grief we’ll run
We will shelter her with tenderness
We’ll love her while we may –
And for the happiness we have now know
Forever grateful stay.”

Heaven’s Prayer

A meeting was held quite far from Earth.
“it’s time again for another birth.”
Said the angels to the Lord above.
“This special child will need much love.”

Her progress may seem very slow,
Accomplishments she may not show.
And she’ll require extra care
From the folks she meets way down there.

In many ways she’ll have to fight strong
But with much love she will belong.
So let’s be careful where she’s sent,
We want her life to be content.

Please Lord find parents who
Will do a special job for you.
They may not realize right away
The leading role they’re asked to play.

But with this child sent from above
Comes stronger faith and richer love.
Their precious charge, so meek and mild
In Heaven’s very special child.

Hailey’s Passing

Written January 8, 2010 for Hailey’s Memorial Service January 9, 2010

We knew because of Hailey’s disorder that we wouldn’t have much time with her. When she was born it seemed like she could pass at any minute, and then day by day she fought and fought and grew stronger and stronger. Eventually we celebrated her 1 week birthday in the hospital. Time continued to pass and she had good days and bad days. The entire time we knew that no matter how good she was doing or how many good days she had in a row, eventually there would come a time that we had to say goodbye to her. Thankfully we were able to bring our baby girl home. One week with her turned to two weeks, and then weeks turned to one month – what a miracle and a blessing from God.

Then we were able to celebrate 5 weeks with her… and that’s when God decided it was time for Hailey to come home to be with Him. Hailey got a fever on her 5 week birthday, but she didn’t show any outward signs of being sick. She was a fighter until the very end. The next day, January 6, God decided to call her home. That morning we woke up to find that Hailey had passed peacefully while we were all sleeping.

We are devastated to lose our darling baby girl, but because of our faith in God and Jesus Christ, we can find hope and even joy during this difficult time. We know that God created Hailey with Trisomy 18 for a reason – even if we don’t necessarily understand His plan. We also know that Hailey’s passing was Jesus calling her home to be with Him in Heaven –and Jesus and her are “dancing” in heaven right now as one of our friends reminded us… We find comfort in knowing Hailey is with her heavenly Father and that she no longer suffers or lives with any of her disabilities or injuries or illnesses as a result of her Trisomy 18 and that she has been made perfect in Heaven.

…so while we will miss her and all the wonderful things about her, today we don’t mourn the loss of a life cut too short nor are we angry with God, we celebrate the life of our amazing daughter and the miraculous 36 days she lived and we remember the joy she brought to our life while she was here… We will always remember her for the strength and courage she showed in such a dark situation. She truly lived a life that was worthy of her name which means “heroine” or “courageous.”

While we will miss holding her and cradling her in our arms and a million other things, we know that we just have to wait and we will hold her again in Heaven.

Hailey Update Sunday, December 20, 2009 at 1:32pm

Just a little update for those of you who are wondering…

Hailey is doing well at home with us. Today she is 19 days old. Every day we have with her is a blessing especially since most Trisomy 18 babies don’t survive birth and most of those who do survive don’t live past 15 days. There are a very small percentage, like Hailey, that can live weeks and months longer than expected. It’s hard to understand how such a small, fragile baby can be such a strong fighter – but that’s our Hailey.

We have hospice nurses coming a few times a week to check in on us and Hailey. She gets weighed every Monday – last Monday she was about 5lbs which meant that she lost about 1lb since birth. She’s still taking bottles of breastmilk, but she was barely getting enough to stay hydrated – drinking takes a lot out of her. So we use a tube to feed her twice a day and she’s getting plenty of nutrients that way. She got an eye infection on Thursday but we’ve been treating it with antibiotics and her eye is doing much better today.

So that’s about all that’s new. It’s great being home with her and we’re excited to spend Christmas with her.

Hailey’s first night home… Thursday, December 10, 2009 at 9:01am

We were discharged from the hospital around noon on Wednesday (Dec. 9th) and made the long drive from Birmingham to Enterprise back home with Hailey arriving around 4pm. When we first received Hailey’s diagnosis and she was having her breathing problems, I never thought it would be possible to bring her home. I wasn’t sure if we’d ever get to put her in her car seat or if she’d ever see her room, sleep in her crib, etc. or if she’d ever meet her big brother Opie. And at that point I wasn’t sure if I’d get many more hours or even a day with her…

But God is continuing to work miracles in Hailey and pour out His blessings on her and us. We’ve been blessed with 9 days with her. We got to put her in her car seat – and boy was that a sight! Such a tiny little girl in that huge car seat. She fussed a little bit at first on the drive, but then slept most of the way. We got to bring her home and show her her room and all of that fun stuff a mom looks forward to. 🙂 And we got to introduce her to Opie. He’s been such a good big brother to her. He respects her space and wants to be by her every time she cries. He sleeps at my feet when I change her. It has been truly awesome!

Not to mention what a great feeling it was to see the sign “Welcome Home Hailey” on our mailbox and the balloons and treats that awaited us inside. Again – I was never sure I’d get to have that memory with Hailey – but I have it now and can’t described how loved and how good God is for watching over us and placing people in our lives to help us.

It’s been less than 24 hrs home but it feels great and we’re all adjusting well! It’s so much more peaceful and comforting to be at home with her.

I should add that Hailey’s daddy is trying to teach her how to suck her thumb since she’s been using her hand more and more. This morning she tried to put her whole fist in her mouth and suck on it – never thought she could do that one!

It’s not an easy or expected situation that we’re in with Hailey and without our faith in God I don’t even want to think where we’d be. But we know Hailey has always been and will continue to be in God’s hands. We don’t necessarily know His purpose in this. But we do know she’s in the best hands to be in and that God will wrap her and us in His love.