Leah's Story

On July 4th, 2008; our lives changed forever as I showed Jeff a positive home pregnancy test I had taken just hours before.  We had decided we were ready to start a family, and after just 1 month of being off the pill, I 'knew' I was pregnant.  I almost fainted at work one day .... I just felt .... different.  Sure enough, we were pregnant! We had a miscarriage scare, I had bouts of morning sickness, and in mid-January of 09 a pre-term labor scare sent me to the hospital for an extended stay.  My blood pressure was rising, Leah's weight gain was not great, and by Feb 8th, an ultrasound showed that the doppler reading on the umbilical cord indicated that Leah was not getting sufficient blood flow.  In Labor and Delivery the docs tried to induce -- with every contraction Leah's heart rate was dropping.  It was time for plan B: a C-section was scheduled for 9 AM the following morning.  At 9:36 AM I saw my angel Leah for the first time. 
She. was. perfect.


Within hours the doctors were confused as to what was going on.  Her blood sugar was off, she threw up the first bottle they gave her, she had an odd spot of sloughed off skin at the very top of her chest, and 2 strange blistery looking spots: one on a thumb, and one a big toe.  As the days passed more blisters popped up.  No doctor knew what was happening.  The NICU nurses treated her like she had some strange baby disease --- with inpervious blue gowns and gloves.  They warned me to be sure I washed my hands really well after I held her for fear of transmitting whatever she had to others.  It killed me. 

We went home with the diagnosis: Epidermolysis Bullosa.  We saw an EB specialist who assured us Leah's case was a modest case of Simplex.  As the months passed, Leah's skin began to break down more .... and to our horror, her breathing worsened .....

On the evening of July 10th, 2009, we all sat in a PICU room inside DC's Children's National Hospital.  An episode of respiratory distress had landed us in the ER the night before.  Around 6 PM Leah started screaming .... like we had never heard her scream.  She was now in severe respiratory distress.  Within minutes Leah had an emergency tracheostomy performed. 
When she was back in her room recovering .... I stood at her bedside with my head in my hands, crying.  I knew that was the beginning of the end, and nothing would ever be the same again. 
Almost a full month later we all came home: Leah, her trach, and her feeding tube.  The amount of care she required went from 60 to 600 mph.  But, those days were some of the "happiest Leah" days ever - and for that, I would've done anything to keep her happy.



While in the hospital healing from the trach, our new dermatologist performed a biopsy. The results that came back were not what we wanted, but were somehow what we expected: Leah had Junctional EB, most likely the Herlitz form. Junctional EB involves both the external (skin) and internal (airway, GI tract, etc).
A child with JEB-H is not expected to reach their 1st birthday ..... my little Leah almost beat those odds................

 

I wrote this the morning after Leah passed away.  I'm sure now, after months of thinking about that day, I could write so much more about little details I remember ... how it was a cold, rainy, miserable day, how the sound of the monitors beeping was making me insane .... how 2 of nurses from Leah's floor came up to see us in the PICU and I hugged them as if I would never let them go.  But so much of it still has that numb feeling; so much so that I think this post has to stand as-is.....  
On the 31st, after we came home from the hospital; we stared at each other for a few hours and then went to bed.   I woke up about 14 hours later, wandered around my eerily empty house, looked in a crib that Leah would never sleep in again, and then opened my laptop and wrote this:


I know most people have found out by now in various ways but, yesterday morning around 9:45 my beautiful little baby Leah got her much earned butterfly wings.




I'll try to write more later about everything, including how we are holding up (which for right now is as well as could be expected).

We still don't really know what happened. Somewhere around 5:30 AM her heart stopped and she stopped breathing - she was resuscitated and sent to the PICU. From there it all went down hill. She was given blood, epinephrine, steroids ............ nothing was helping. Around 9:30 the nurse couldn't get a blood pressure on her and we knew it was time to stop. The Leah that was laying on that table was not MY Leah. It looked nothing like her - we knew the real Leah was already gone. She was given 2 doses of morphine to ensure she was pain-free.

So please know that she was not on an uncomfortable hospital bed with strangers around her pumping foreign things into her little body during her last minutes. We had them take the ventilator off and disconnect the IVs and she was placed in my arms. My little fighter stayed with me for a few minutes - battling until the very end. I just rocked her and told her: "No more pain, no more blood, no more hospitals, no more EB". All I ever wanted for her was to be pain free and happy - and this is the only way that could've happened. I know she's in heaven - EB free and beautifully perfect. I know all my grandmothers and great-grandmothers are passing her around, loving her. I know she's smiling that Leah smile with those big blue eyes. She will never be alone and will never be in pain again. I know she'll always be with me, watching over me - and I know I will see her again some day and I'll be able to hug her as I never could here.

Golden slumbers fill your eyes
Smiles awake you when you rise
Sleep pretty darling do not cry
And I will sing a lullaby

30 comments:

Tiffany said...

Beautiful Leah . . . thank you for sharing, mom. May your faith increase, and your heart grow and may you find peace. My heart goes out to you all . . . God's blessings on you always and of course Leah.

Gala said...

I randomly came across your blog, Meghann. I'm so sad to hear about your baby girl. May you and your husband find peace and joy in the midst of your sorrow

Laurie in Ca. said...

I just came across your blog tonight and want to let you know I will be praying for you and your family. I am so sorry Leah could not stay. May God hold you all gently as He carries you through this. Your daughter is just beautiful and perfect.

Love and Hugs, Laurie

Rachel said...

Dear Meghann--I just wanted to reach out and say how sorry I am for your loss. I can't imagine how difficult this past year has been for you. Your daughter is absolutley stunning! I will pray for you and your husband.
--Rachel

Anonymous said...

Leah and I share a birthday (36 years apart). Now, I will always remember her.

berättaren said...

This was the most beautiful thing I have ever read, your words really toched my heart, I don't think I have cried this much in months. I will pray for you and your little angel daughter all the way here from Sweden. I hope you find strength through your pain and know she will always be with you. Lots of love and hugs. /Matilda Vikström (Umeå, Sweden)

Anonymous said...

I just read your story for the first time tonight..what a truly beautiful child..inside and out..
she is watching over you...your little angel Leah. And what a reunion it will be when you are all together in heaven..bless you today and always...ann

Anonymous said...

Thank you for sharing your story. Bless you and beautiful little Leah and I wish you all the peace in the world with the knowledge that you will be reunited one day

Christine said...

I came across your blog from Tripp's page. Leah was a beautiful baby girl. I am so sorry for your loss. I haven't cried this much in a while. I know you miss your beautiful Leah but you know she's watching over you. I have added Leah's button to my Baby Gaga page. You are forever in my prayers.

Sara said...

Your blog brought me to tears, thank you for posting your story and all these wonderful beautiful pictures of your daughter, Leah. May you and your husband find peace within in this tragedy and God Bless you.

Misti said...

What a beautiful baby girl. You are a very strong woman to deal with all of this. I can't even imagine watching one of my babies suffer the way she did. Now she is an angel with God watching over you. You are in my prayers.

michele said...

~hello~
i saw you quoted Revelation 21:4~
thats the one i wanted to share with you! we look forward to the fulfillment of the Lord's Prayer, when that scripture will be a reality~! i broke down in tears when i saw your dear baby~and read a bit of the story~i really couldn't read it all~put your trust in God and keep praying for His Kingdom to come ''on earth, as it is in Heaven...'' Then there will be the resurrection of our loved ones that are sleeping. Love,
michele

Cristy and Daniel said...

I don't even know what to say.... I am so sorry Leah went through that during her time on Earth, and that you lost your little girl. I cannot even imagine the pain. I am so glad that you had God to lean on. May He continue to give you love and comfort. God bless!

Anonymous said...

I am sitting here crying. What a beautiful baby. I am so sorry she had to go through this pain. You have been her angel here on earth and now she's your little angel in heaven.

Anonymous said...

I read your story and she was so beautiful. Your in my thoughts and prayers. Im crying so hard now.

Anonymous said...

You and your husband, as well as every other parent of an EB baby, have truly earned your wings as well. Your story has touched my heart. God bless you.

Mumofzephyr said...

I lost a son in March 2004 due to an inherited terminal deletion of the X Chromsome. He was five months old. He ... was a fighter, just like every baby and child I've read about. It always amazes me how these babies fight so hard and so long for something before they even get a chance to know what life is about ... He made me a mother in every sense of the word.

Eight years after his birth, I still miss him, but I've learned to enjoy life again. You will too. Peace be with you and your husband.

Susan (5 Minutes For Mom) said...

I'm crying and I don't know what to say. But I thought I'd let you know I was here and that I'm thinking of you and Leah and all the babies with EB.

I am so desperately sorry.

saundra said...

As a mother who has lost a child, my heart goes out to you. As a mother who has raised a child and has grandchildren, my soal crys for your pain. I cannot ever imagine what you have gone thru and continue to go thru. I will never have the courage that you and everyone going thru this disease has. You people are truely this worlds superhero.

saundra said...

As a mother who has lost a child, my heart goes out to you. As a mother who has raised a child and has grandchildren, my soal crys for your pain. I cannot ever imagine what you have gone thru and continue to go thru. I will never have the courage that you and everyone going thru this disease has. You people are truely this worlds superhero.

Kathy said...

I had come across your website while looking at another site. My thoughts and prayers are with you and your family. Your story is touching and i couldn't help but cry. I wish you nothing but the best in your life, many blessings. You should feel extra special because you have a beautiful angel looking down on you and your family!

Anonymous said...

I just came across your article. I cannot imagine the pain your family endured. Such a sad story and I just KNOW she is safely in the arms of our lord father. God bless you and your family forever.

Our Family said...

she was beautiful.

Victor from New Orleans said...

Youre posting about Leah's life is very touching. I, myself lost my daughter March 9, 2011 to a different syndrome, Trisomy 13. My beautiful daughters name is also Leah. My beautiful Leah only survived 45 minutes. At Leahs funeral, I pointed out to my girlfriend that butterflies were eerywhere! To this day, I see a butterfly daily, in person, on T.V., in a magazine, ect. Mostly I see butterflies in person, and when I do, i cant help myself but to think about my Leah. So to read about youre Leah and her getting her butterfly wings brought tears to my eyes! I miss my Leah sooo much, I imagine just as much as you miss yours. My prayrs go out to you and youre family, just as the payers came in for mine. God Bless!

Katrina said...

I was web surfing and ran across your blog. I'm very sorry to hear about your daughter Leah, and I'm happy to see Tabitha is doing well. :) They were and are both beautiful children.

I didn't really start crying until I saw you posted lyrics from "Golden slumbers". When I have children, that's what I want to sing to them. Now when I eventually do that, I'll be thinking of Leah and singing for her, too <3

jen said...

This made me cry so hard my 2 year old came and hugged me. My son was born May 22 2009 and Tripp and Leahs stories hit home with me. I lost my 19 year old stepson this past November and I do not think any parent should ever lose a child but in your case letting go was the only choice you had for her. I totally admire your strength to share this and to go on every day. My heart aches for you and I will think of her always as I watch Taylor grow and think your family. I truly am so sorry for your loss from a mother to a mother! I

jen said...

This made me cry so hard my 2 year old came and hugged me. My son was born May 22 2009 and Tripp and Leahs stories hit home with me. I lost my 19 year old stepson this past November and I do not think any parent should ever lose a child but in your case letting go was the only choice you had for her. I totally admire your strength to share this and to go on every day. My heart aches for you and I will think of her always as I watch Taylor grow and think your family. I truly am so sorry for your loss from a mother to a mother! I

Hannah Rose said...

I just found your blog from Tripp's mommy's blog.

Thank you for sharing Leah with us all...she is precious, perfect.

Bonnie H. said...

I cannot even fathom the emotions and feelings that went through you and your husband. Im reading the entire blog and crying intensely. My shirt is soaked in tears, my face is completely wet. Seeing beautiful Leah, i see my daughter's face. She was born a month ago after years of trying to conceive. She doesnt have EB, but after reading Leah's story, my heart hurts from thinking what if she had been born with it. After reading your blog, all i wanna do is hold her and never let her go. I have no idea how you could be so strong. I applaud you and hug and kiss you for being so. I have no words to express how i feel about what happened to Leah and what you must have gone through. I love you and your strenghth and ask the Lord to bless you and your family.

hollie said...

I came across your blog through Tripp's mama's blog. OH waht a beautiful child! Leah looks like an angel. Love to you and to your family on this Valentines day.

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