Tuesday, June 18, 2013

Back to the Emergency Room...

Today was a special day all around.

This morning, Brian and I went to my ultrasound.  He waited patiently (and unaware) in the waiting room while I got my glimpse of Hope.  Sleeping again this week, but growing so well!  Take a look!
In less than four days I will officially be in my second trimester.  So grateful.

After the appointment, Brian and I stopped for a special treat - cookies and milk at none other than "Hope's Cookies!"
On the way home, we stopped at a HUGE playground that was truly impossible to drive by and Brian had such a great time.
But the biggest event of the day was our trip back to the emergency room at Paoli Hospital.  I was very, very nervous and only hoped that our gratefulness to them shined through.  I have been so worried about all of them since April 10th.  Not a day has gone by that they haven't been on my mind.  Truly.

The meeting was, as I suspected, sacred.  I was grateful for their reception... their kindness... and their compassion.  I learned today that they called to the PICU at DuPont once a shift to check on Gavin the entire time he was there.  Ed and I will never forget our ER team and how they saved Gavin's life that day... so that we could spend the next four days with him before he died.

Below is my "speech" to the men and women who stood in that room with us and breathed life into Gavin on April 10th.

Thank you so much for meeting with us today.  We know how busy you are so the fact that you took the time to be here means a lot to us.  It really does.

I'm sure there is a frustration in treating someone in the ER and then, sometimes, never hearing the outcome.  So we are here today to tell you what happened after that helicopter flew away from this hospital with our son on April 10th.

The short version?  He died.  When he got to DuPont, he had two more cardiac arrests that evening.  He suffered profound brain damage that led to his brain death four days later on my birthday, April 14th.

The long version?  Well… first, I have a confession.  I stopped at the ER for reasons even I can't explain.  I'm overprotective, but bringing him to the ER for the symptoms he had was over the top even for me.  When I got him out of the car, I could hold him upright on my hip.  But, in a move that I'm embarrassed to admit… I changed his position to carry him in like a baby.  "If it looks more serious, perhaps they'll whisk us back and we'll get home faster," I thought.  I now know that every single decision I made that day was guided.  I kept both boys home from school because they had allergies.  I changed their acupuncture appointment to earlier which put us directly across the street from the pediatrician and this ER.  

Standing, pacing and needing to be close to Gavin in those terrible moments was every parent's nightmare.  But you did everything you could to talk to me - and to Ed when he arrived.  The chaplain seemed to know that Ed needed her comfort - and I needed my space.  I wanted to be right in there to hear and see everything that was going on medically.  I wanted cold, hard facts - and you provided that.

He made it to DuPont and we were able to spend four beautiful days loving on our first born son.  We laid with him during the day and slept with him at night.  Two days before he died, we brought his little four year old brother in for a special good bye which was beautifully done thanks to DuPont's Child Life department.  I was able to bathe him… we were able to hold him… and we were surrounded by doctors, nurses, and other staff from the hospital that know us and love him and we couldn't have been more supported through this process.  Doctors that have cared for him over the past five and a half years were able to come in to see him and say goodbye… one of his doctors even flew home early from a trip so she could see him one last time!  He was - and is - so loved.

On the morning of his death, my 43rd birthday, I woke up next to him with an overwhelming feeling.  I just knew I was pregnant.  After years of infertility, multiple miscarriages and a stillbirth… we had given up and given all of our baby things away.  It was hard to believe my intuition, but I just knew I was inexplicably pregnant.  And I felt from that day that this was a daughter… and that we would name her Hope.  Well… Hope Margaret will be making her debut, hopefully in this hospital where her two brothers were born, at Christmas time.

Ed and I made the easy decision to donate his organs.  Our child was non-verbal, but he managed to help people… to heal them even… as if that was his life's mission… and never needed to speak a word to do it.  It was only appropriate that we honor him by allowing him to continue that mission in death.  His kidneys were able to save the life of a 40 year old man… and his organ donation journey spread like wildfire on social media, prompting hundreds of people to email me telling me that they had become organ donors because of Gavin… telling me they have had conversations with their families about the unthinkable:  what would we do if we were faced with the choice of donating our own child's organs?  I am so, very proud of that… and we are overwhelmingly proud of Gavin who died a hero.  We waited overnight with his body until the surgeons were ready for the organ harvest.  It was a privilege for us to wait, knowing that someone on the other end would be receiving Gavin's organs and have a chance at life.  On the foot of his bed was a sign we had made that said:  "Superhero Gavin… Off to Save Lives"  We followed the surgeons as they wheeled him down the entire length of the PICU and couldn't fight back tears as the doctors, nurses, social workers, and other staff lined the hall and clapped.  They clapped for our son.  For his gift.

I tell you all of this because those four beautiful and heart-wrenching days wouldn't have been possible if it hadn't been for you.  With all we have gone through, I have to tell you… each of you have been on my mind.  A lot.  I have worried about you since that day.  I won't presume to even guess how you handle life and death moments with patients - especially children.  But I worried that in some way you carried a burden… maybe wondered if you did enough… or worried that you weren't fast enough… or were concerned that in some way we might have blamed you.  That is the main reason why this meeting was so important to me.  We need you to know how GRATEFUL we are to each and every one of you.  You kept him alive so he could get to his second home… DuPont.  You kept him alive so we could spend those days with him… allow his brother to say goodbye to him… allow us to process what was happening before we came home without him for the first time.  You kept him alive.

Gavin was always a very mysterious child.  He remains undiagnosed, despite getting every genetic test available… and his autopsy was inconclusive.  We will likely never know why this happened, but we believe it was set in motion before we stepped foot in this hospital and despite your best efforts, this was part of a plan that we may not understand.  That in itself confirms MY suspicions.  This mysterious little angel slipped onto Earth with a very serious mission… to change people.  Then he slipped back to Heaven just as mysteriously.  He really changed people - and he continues to even now.  I hope in some small way he will change you as medical professionals.  If you ever doubt… remember Gavin.  Remember our short time here and how deeply you impacted us - we wouldn't be back here if that weren't true.  Not every family will come back… you might not hear thanks… you may hear mostly complaints.  So, if you ever doubt… remember my words.  The outcome may not be what you train for, what you work hard for… but you are still helping people. You are privileged to stand with people through what may turn out to be the most profound journey of their lives... 

…and we thank you for standing with us.

Kate, Ed and Brian Leong

18 June, 2013


  1. Wow. That's all I can say. You are an amazing lady, Kate. Love and Hugs.

  2. Kate,
    I Have not yet commented on any of your posts. As a mother of a 3 year old son, I've found your story almost too painful to read, but I cannot stop reading. I worked with Ed at Wyeth some years ago and though I never really knew him well, I remember him and his ready smile. I was so sorry to hear about Gavin and I'm thrilled to hear about Hope. My son arrived 7 weeks early and was delivered at Paoli as well (and spent 3 weeks in their NICU). I love that hospital and everyone who works there! I'm happy to hear that Hope will also come into the world via Paoli. :) So - my heartfelt sympathy for your loss and congratulations on the new life you are growing. Love to Ed and Brian too!

    Kindest Regards,
    Denise Todd

  3. Wow. You and your family are amazing. You all are changing lives.....this was beautiful. Much love to you.

  4. Oh, my gosh, Kate. As always, you break my heart; and inspire me; humble me; challenge me. Gavin is STILL touching lives today, through your words and actions. Many, many hugs to you, Ed, and Brian...and to HOPE!!!

    Nancy Johnson

  5. What a beautiful post :) Glad I wasn't wearing mascara today.

  6. As a nurse we often so wonder what we should have done differently to change the outcome. It is nice to hear that its ok, especially in such a horrific time. I can't stop crying. Bless you.

  7. You continue to amaze me and I feel lucky to have found your blog. You inspire me every time I read one of your posts. I feel connected to you somehow; maybe because you live close by, or the fact we share the same birthday. I'm not sure what it is. But I have a sneaking suspicion that it's not just Gavin that is a superhero, but all of your family.

  8. Thank you for sharing, that was absolutely the most beautiful speech I have ever had the privilege to read.

  9. I am always amazed and in tears after reading your posts. Thank you for sharing and continue to let Gavin inspire so many lives by your blog.

  10. And in tears yet again...I know what it is like to desire children...I knew as a child, I wanted to be a mom. It didn't happen for me. You have been so blessed with Gavin. What a beautiful soul you were allowed to love. I wish you blessings, peace, comfort, joy, and most of all HOPE!

  11. Wow. You have a gift with words, as Gavin had a special gift of his own. You both touch people in a deep way. Thank you for sharing your heart.

  12. You should put all your loving insights into a book~if you could find the time!
    congrats on your future baby!

    Kind Regards~

  13. I have known it since shortly after I started reading your blog but this just cements it, you and Ed are truly fabulous.

  14. Kate...I am in awe of you. The strength it must have taken to go back there and comfort others. Your words were as usual, beautiful, heartfelt, and not over the top. I hope these acts for you have brought some peace.

    Thank you again for sharing! I feel like I learn from you everyday.

    Praying for Hope! (and you and Ed and Brian too!)

  15. Kate...both of your speeches that you gave at each hospital need to go into a Medical Journal that students studying to become doctors and nurses can read! The long journey that Medical Students must take to get to the point of being that DR or Nurse in that ER Room, or inside that helicopter up in the air rushing someone's loved one to another hospital in such critical care....THEY Need to hear what a difference they have made in the Family of those patients. I sometimes see on TV the awards the fireman or the police man get for being a Hero, but it's the 911 operator and the ER Nurse and DR that don't ever get to hear a story like Yours <3 You continue to amaze me and fill my heart with Joy when I see the acts of kindness you continue to bring to people from such a tragic time in your live. Every Time You and Ed honor your very own Hero Gavin ...I can see him flying with his little super hero cape on up in heaven with all his new little friends and telling everyone ..."That's MY Mommy & Daddy"....I Love them To the Moon and Back ...<3 <3 <3 <3 <3

  16. Courageous Kate... You continue to inspire... It is so important that people hear the positive...how blessed they are that you took the time to be so gracious during such a difficult time...

    I've no doubt your words will resonate with them for a lifetime...

    Hugs and healing...

  17. Kate,

    Did you see that facebook now gives you the option to say you're an organ donor? I hope a lot of people (especially those without living wills) will do this! Here's how to do it!


  18. I have been reading your posts since shortly before Gavin passed away. My mom shares your birthday and Gavin's superhero day. Your posts touch my heart each and every day, and today was no different. You see. ..I am an ER nurse. I truly feel that being a nurse (and a mom) is my mission. And I can tell you from the bottom of my heart that being there for each and every patient. .. each family member... every day. .. in someone's time of need is such a fulfilling and wonderful opportunity. Given the nature of the emergency room, there usually isn't any follow up. You don't know what hapens after someone leaves the ER. You know you do the best you can, and you can only hope that it is enough. No thanks are needed or expected. But they are genuinely appreciated. Your thanks and appreciation to your group of nurses, doctors, and other staff members resonates across the medical family. Thank you for sharing Gavin, Brian, your family, your story with all of us. You give me HOPE that I make a difference!


  19. Wow. Just wow. What an amazing gift you gave those medical professionals with your words. Those words will live in their hearts and minds forever.

    From another mama who knows xx

  20. I can only imagine what an emotional trip back that was. I've only visited the hospital where my daughter passed away once and it was draining. I'm so happy for you that you have Hope. We too found out we were pregnant soon after losing our daughter and, as scary as that pregnancy was, it carried me through many days and he is our little light now.

  21. Kate I am amazed at your strength. But I do have to say every time I see this post I feel like I get a kick in the gut when I see the title "Back in the Emergency Room". Then I remember WHY you went back and I breathe again. I find it a testament to your open sharing of your life that I feel so invested in your family despite never meeting you. Thanks for making me fall in love with your family.

  22. I can only HOPE that I live my life with the love, grace, strength, thoughtfulness, honesty and forthrightness that you do. More than being a wife and a mother, you are such a wonderful example to all of us of how we are to live and see our lives in the light of the One who made us.


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