Beating All Odds {Birth Defect Awareness}

Last week I shared my story of entering into motherhood with all of you, and while my journey may have ended on the operating table that one fateful day – my beautiful boy’s journey was only beginning.  His story is one of hope, love, and beating all odds…and my wish is that he will help to shed some light on the world of birth defects for all of you.

Omphalocele :: a type of abdominal wall defect in which the intestines, liver, and occasionally other organs remain outside of the abdomen in a sac because of a defect in the development of the muscles of the abdominal wall. Omphaloceles occur in 2.5/10,000 births and are associated with a high rate of mortality (25%) and severe malformations, such as cardiac anomalies and neural tube defect.  {Source :: Wikipedia}

Before Hayes was born, I had no idea that word even existed in the English language … let alone what it meant or the magnitude that it could have on a family.  However, once we learned what it was, it quickly became the only word we could even think of.  We began researching omphaloceles, looking at omphaloceles, connecting with other omphalocele families…  That one little word consumed us.  And then once our beautiful boy was born, it was our world.  HE was our world.

After I gave him those sweet little kisses I ended with in my birth story, he quickly began to get very sick.  The half dozen nurses that stood in waiting jumped into action, and he was whisked away from me in what felt like a giant blur.  He was rushed off to the NICU, and that was the last time I saw him during his entire first day of life.  After nine precious months together, we were separated and taken several floors apart.  And I think my heart completely broke right then and there.

Once in the NICU, they struggled to get his breathing under control.  They tried an oxygen hood, but he still needed more.  So then they put him on CPAP, but he still needed more.  Finally, he was put on a ventilator which took over his breathing for him.  You see, babies born with omphaloceles often suffer from respiratory distress due to the displacement of the organs that are within their thoracic cavity.  The larger the omphalocele, the more complications they can have.  And Hayes’s omphalocele was classified as giant.

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Cody, my beloved husband, wore out the elevators at Children’s Memorial Hermann that never-ending day.  Going up and down, up and down.  Capturing pictures and videos of my brave little fighter to show off to me, and gathering blankets and other belongings of mine to snuggle up to Hayes.  My heart longed for my sweet baby boy all day and all night.  It was so incredibly tough, but we both got through it.  Even though I have no idea how.

The next morning, I begged the nurses to clear me so I could get out of bed, and I pleaded with Cody to push me faster and faster up to the NICU.  My sweet little boy needed me … and I needed him.

I will never forget the first time entering his pod.  It was the most critical pod in the highest level NICU at one of the best children’s hospitals in the world.  And my son was there.  He was hooked up to countless monitors and machines.  So many that his tiny little body almost got lost amongst it all.  But I easily found his little hand, and we held on to each other so tight for days on end.

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I held on to his precious hand as his lungs got stronger and the settings on his ventilator got lower.  So low that they were finally able to move him to a nasal cannula.  And then to room air.  It was such a glorious day to finally more of his precious face, and it also meant that I was finally able to hold my sweet baby boy.  My arms had felt so empty all those days, and words cannot express what it feels like to hold a baby after waiting for so very long.

Omphalocele3

The following day, the doctors decided that Hayes was ready to try a little bit of expressed breastmilk.  Three milliliters {or a little over half of a teaspoon} to be exact.  I was beyond ecstatic when he latched on to that bottle and slowly drank it down over the course of about fifteen minutes.  But then I was devastated when his sensitive digestive system didn’t tolerate the milk my body was working so hard to produce for him.  And so began the biggest battle of his short little life.

Omphalocele4

I knew that babies with omphaloceles often suffered from eating issues, after all – Hayes’s stomach was outside of his body.  But I had no idea that such a tiny amount of milk could cause such a big problem.  We would try feeding him by bottle every few days, but his body just could not digest it … and the medical staff would decide to cease all feeds.  The doctors exhausted all resources looking for blockages and trying to find the cause – all to no avail.  Until one day they decided that they needed to give him a feeding tube that bypassed his stomach all together and dropped milk directly into his intestines.  I was crushed as we had already been in the hospital for over two weeks at this point, and a feeding tube such as that pushed going home back to a place we could not even imagine.

So I asked the doctor’s for just one. more. chance.

While they went to get a bottle ready, I gently picked up Hayes and snuggled him on my chest.  And there by his bedside, I prayed over him and pleaded with him to please digest his milk.  When the nurse got back, I fed him that three milliliter bottle of my very own milk.  He drank it down.  And miraculously … he digested it.  So we waited a few hours and then tried again.  And he drank and digested that too.  The doctors were dumbfounded as to what had changed in his sweet tiny body, but in my heart I knew it was because of that moment we shared.  From there, Hayes was able to slowly increase his feeds until he was drinking as much as most babies his age and weight were.

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Then, out of nowhere, the doctors said the word that I had been waiting so long to hear – home.  They had done all they could do at that time, and they were sending us home to take over his care until he was ready for surgery to repair his defect.  I was elated and terrified all at the same time.

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Once at home, we quickly assumed the roles of Dr. Mom and Dr. Dad.  Treating and wrapping his omphalocele, coordinating his therapies, and loving him unconditionally all the while.  We watched as he got bigger, and his personality began to develop, and all of the normal things that moms and dads do with their first born.  But we also drove down to the Med Center more times than I can count and bought out the bandage rolls each time we went to Target.  It was a tough job, but we were honored to do it.  And our love for Hayes grew deeper each and every day.

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At four months old, we learned that along with his omphalocle, Hayes also suffered from torticollis and plagiocephaly.  A condition which caused his neck to turn to one side and his head to develop a flat spot.  This was likely due to his awkward breech position in utero, his extended NICU stay, and his inability to engage in tummy time.  So we added another specialist to his long list of doctors, more appointments to his already busy schedule, and a super cool camo helmet to help remold his developing skull at around six months old.

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So there we were.  Dr. Mom, Dr. Dad, and a baby boy with an omphalocele and a helmet.  We were definitely a sight to behold, but it was our little family – and honestly, we didn’t know life any other way.  We were finally settled in to our usual routine when we went to what we thought was just a routine pediatric surgery appointment.  Little did we know, it turned out to be so much more.  There in the exam room, we heard those three little words that we had been both waiting for and dreading … “It was time.”  Time for Hayes to undergo surgery to correct his omphalocele and completely change his life.

Dr. Tsao, our pediatric surgeon and absolute hero, explained what we already knew.  Hayes’s omphalocele was getting larger and larger, and we just could not wait anymore.  It was time for surgery.  And … he wanted to try something new.  He told us that Hayes was a really good candidate for an innovative technique that was just now being used in pediatric omphalocele repair.  Hayes would only be the 8th or 9th child to have this procedure done, and his was by far the largest defect that they had ever attempted to repair this way.  It was a risk, but the benefit was that he would be able to correct the omphalocele in only one surgery, rather than the multiple surgery technique we were anticipating.  We trusted in the doctor we looked up to so much, and we were prepared to put our son’s life completely in his hands.

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On January 6, 2012, we kissed Hayes farewell and passed him off to the healing hands of Dr. Tsao and his colleague Dr. Andrassy.  And there on the operating table, they were able to put all of his organs {stomach, liver, and intestines} back inside of his abdomen and repair his omphalocele in just one surgery.

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The results were nothing short of amazing, but they did not come without worry and heartache.  Hayes spent two long weeks in the hospital, one of which in the PICU on life support as his lungs had trouble adapting to the changes.

Words cannot express how it feels to watch your precious little baby lay lifeless in a hospital bed.  Attached to machines and pumps with the incessant beeping from monitors playing constantly in the background.  Wanting nothing more than to take the pain and the discomfort away, but being helpless as you sit there by their side.  It is a dull nagging ache that only a mother who has been in those shoes can know … and a feeling I would not wish on my worst enemy.

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But once again, we made it through.  Even more unsure how we did this one.

Hayes’s little body healed.  His lungs got stronger.  And we were once again able to bring him home.  But this time on supplemental oxygen.

For most moms, this would be one of the most joyful times of their lives.  Having their baby healed and at home.  But I struggled.

Everything is a challenge when you have a baby whose wounds are still healing and who has to be connected to oxygen 24 hours a day.  Giving baths, riding in the car, running errands.  It was just all so hard.  And you should have seen the looks I got from strangers.  The looks of shock and the looks of pity.  Those hurt more than any words ever could.  Because what those strangers failed to see was that I was just a mom with her baby … who just so happened to have a helmet, and wear a nasal cannula, and be connected to an oxygen tank.  But a mom and her baby first and foremost.

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But time went on.  And my heart healed with Hayes’s incision.  We were able to wean him off of oxygen until he just needed it at night and then not at all.  Days turned into months and months turned into years.  Hayes became a big brother, and now we are getting ready for him to turn three years old.  I can hardly believe it. 

And that word that we focused so much attention on?  That word that seemed to define us?  It has now just become a small piece of our story.  A story that with all of the fear, all of the heartache, all of the anguish … I would still not write any other way.

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Today Houston Moms Blog is dedicated to spreading awareness about birth defects, and Hayes’s story is just one of many that we plan to share with all of you.  Please join us as real local moms open up and tell the stories of their little miracles all throughout the day.  Our hope is that we can open the eyes and open the hearts of the moms in our community and that our little fighters will become the brave faces of birth defects here in Houston.  To read more, please click here.

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44 Responses to Beating All Odds {Birth Defect Awareness}

  1. Lauren January 27, 2014 at 8:29 am #

    Thanks for sharing Kelly! What an inspiring story. Hayes is adorable! All the NICU and helmet pictures bring back so many memories for me.

    • Kelly D
      Kelly D January 27, 2014 at 9:50 pm #

      Thanks, Lauren! I know you can relate to the rollercoaster that comes with these special babies…but at the end of the day – we are so truly blessed!

  2. Emily Ryan January 27, 2014 at 10:25 am #

    What a wonderful, touching story! You are a fabulous mother, and I think your kiddos are so blessed. Thank you for sharing them with us!

    • Kelly D
      Kelly D January 27, 2014 at 9:51 pm #

      Thank you so much, Emily! Having the opportunity to share our story is so cathartic, and it is truly an honor to have so many people reading along!

  3. Emily S. January 27, 2014 at 12:13 pm #

    What a great story and such a strong little boy Hayes is and how strong his parents are. Will Hayes have to undergo any other surgeries or struggles as he gets older having been born with this?

    • Kelly D
      Kelly D January 27, 2014 at 9:57 pm #

      Thank you so much for the kind words! Hayes actually underwent one other surgery several months after the omphalocele repair, and he has one more that I have a feeling will come sooner than later too. But those are both so minor in comparison to all that we have already been through! And as for his future – the sky is the limit!!! His pedi surg has pretty much cleared him to be a regular little boy, but the mommy in me will probably put my foot down to full contact sports or anything that could cause severe injury to his abdominal region.

  4. Tiffanie V
    Tiffanie V January 27, 2014 at 4:50 pm #

    He always looks so happy. I love it! What a super strong boy he is!

    • Kelly D
      Kelly D January 27, 2014 at 10:00 pm #

      He truly is the happiest little guy! And I have come to believe that a rough start to life can lead to some pretty amazing little boys…which I know you can totally relate to!

  5. Terri King January 27, 2014 at 6:23 pm #

    Kelly,
    So good to see you and read about your beautiful little boy. He could not have been blessed with a better momma. You may not remember me from your previous school, but as soon as I saw your picture I was thrilled to read your blog. Your blog will be a great thing for so many people who do not understand or know how to approach/cope with children with disabilities. Keep up the good work. Happy birthday to Hayes and God Bless your wonderful family.

    Terri

    • Kelly D
      Kelly D January 27, 2014 at 10:09 pm #

      Of course I remember you Terri…and it is so good to reconnect! Thank you for reading our story and for all of the sweet words. You stated my hopes exactly – to spread awareness and help others find ways to cope. That is my wish!

  6. Jana
    Jana January 27, 2014 at 8:42 pm #

    Wow what an amazing story. I would have never known he (and your family) went through all that. He is one tough little boy! And such a cutie!!

    • Kelly D
      Kelly D January 27, 2014 at 10:10 pm #

      Thanks Jana! It was definitely a journey…but one we would not trade for the world!

  7. Chelsea Purifoy
    Chelsea Purifoy January 27, 2014 at 9:41 pm #

    What an incredible story Kelly. I already thought the world of you Kell, but now even more. Hayes is such a strong little guy and what. a. cutie!!! Love that smile too. Thanks for sharing your story with us. Hayes can never say that he can’t do something after overcoming those odds! You are such a good momma and strong, strong lady!!!

    • Kelly D
      Kelly D January 27, 2014 at 10:11 pm #

      Awww, thanks Chels! He is truly my hero…and my best friend too. Can’t wait for you to meet him one day – hopefully soon!

  8. Lauren Kimmel January 27, 2014 at 9:57 pm #

    Wow!! So many tears reading this. So so thankful for God’s incredible hand in this story. From one Hayes lover to another…

    xoxo

    • Kelly D
      Kelly D January 27, 2014 at 10:14 pm #

      God is so very good! We give Him all the thanks for our amazing boy and for helping Hayes to defeat all odds. Hugs to you and your Hayes too!

  9. Kate April 28, 2014 at 1:15 am #

    Thank you for your beautiful story. I just had my 12w scan and received some tough news too. Our bub has an abdominal hernia of some kind and fluid around its heart. Preliminary CVS results have come back normal, but am still waiting on full results. This is a terrifying time. My husband and I are so in love with our bub already, and are going to fight for it. We still don’t know what is wrong with our bub, but your story hit so close to home for me. You have a beautiful little boy. Thank you again.

    • Kelly D
      Kelly D May 12, 2014 at 5:54 pm #

      Thanks again for your comment Kate…happy to connect with you via email too!

  10. Britt May 12, 2014 at 11:11 am #

    Heart warming story. Hayes is a tough little guy!

    Quick question, our little guy Reid may end up in a helment just like Hayes for his flat spot that developed when he was favoring his left. Where did you get Hayes’ helmet decorated in the duck blind camo? If Reid ends up in a helmet, I’d rather the helmet be as cool as Hayes’.

    • Kelly D
      Kelly D May 12, 2014 at 5:56 pm #

      We actually went through a car wrapping company for Hayes’s helmet. They were so kind and patient and did a great job turning his drab white helmet into something really amazing! It made such a difference in the whole experience.

      PS – Love the name Reid…that’s my sweet nephew’s name! πŸ™‚

  11. Evelyn Hooten July 27, 2014 at 7:26 pm #

    Kelly,
    Words cannot describe all of the feelings that I felt while reading this incredible story. God is miraculous!! I did not know of all of this emotional trauma that you experienced with your precious Hayes, but praise God in His healing of your little one.
    Thank you for sharing this powerful story. I pray that your story will be uplifting to other moms and dads that may be experiencing times such as this; to look to God, the healer and comforter to help them through their waiting and hoping times.
    Many blessings to your family!
    Love, Evelyn Hooten

    • Kelly D
      Kelly D July 28, 2014 at 11:04 pm #

      Aw, thank you so much for your kind words! God is so, so good…and we definitely give him all the glory for our sweet boy and his beautifully crazy story. I wouldn’t change a thing, and I am so proud to spread awareness and share him with the world!

  12. Meagan C
    Meagan C July 27, 2014 at 7:47 pm #

    I get chills every time I read his story. Strong boy, strong momma. Xoxo

    • Kelly D
      Kelly D July 28, 2014 at 11:02 pm #

      Muah! From one super strong mama to another!!! πŸ™‚

  13. Brooke July 28, 2014 at 10:44 pm #

    It was such an honor getting to care for Hayes in his early days in the NICU and I have never forgotten about your sweet boy and your adorable family. Just wanted to say that he looks awesome and so happy!! Congratulations on his little sister and I wish you all the best of luck. You are a wonderful mommy!

    • Kelly D
      Kelly D July 28, 2014 at 11:08 pm #

      BROOKE!!! Oh my word, it is sooo good to hear from you! Such a small world that you found his story here, and I am so glad you decided to comment and reach out. We think of you and all of the amazing NICU staff often, and we constantly send up prayers of thanksgiving for all of the love and care y’all provided our sweet boy. You all saved his life and helped him become the wild little boy he is today, and we are forever grateful! Sending love and best wishes your way!!! πŸ™‚

  14. Karen Jacot November 28, 2014 at 7:52 pm #

    I just read this and your birth story…Kelly, your writing made me tear up.

    • Kelly D
      Kelly D January 9, 2015 at 12:30 pm #

      Thank you, Karen! He is such a blessing. And of course…Hadley too. πŸ™‚

  15. Cagdas January 8, 2015 at 9:18 pm #

    Amazing Story. How beautiful he is. I am so glad he is doing much better. Great job mom πŸ™‚ you are amazing ! So daddy !

    • Kelly D
      Kelly D January 9, 2015 at 12:31 pm #

      Thank you for the sweet words! No clue how I got so blessed – but I’m sure glad I did!

  16. Jen January 17, 2015 at 7:03 pm #

    i absolutely could not imagine! I cried the entire time I was reading your story. So absolutely gracious and beautiful. Your little boy is an angel and you are his!

  17. Lisa m January 31, 2015 at 8:31 pm #

    Thanks for this article. My daughter had a very large, very rare tumor in utero and it was removed hours after she was born. Seeing these pics and hearing your story brought back painful memories. She is a year and a half now and the biggest blessing I could imagine. I haven’t totally dealt with a lot of the emotion of hearing how she could die constantly over several months. But I know that will come in time. Thanks for sharing and God bless you and your son. Thank God for the miracles were allowed to experience. :).

  18. ardonita May 15, 2015 at 5:31 am #

    Best mother ever,may God bless you and your cute child,a very emotional story,full of challenges but the best of all full of hope and love,carry one fighting you are the type of Moms that world needs the most,again May God Bless you ans your family.

    • Kelly D
      Kelly D May 15, 2015 at 10:43 am #

      Thank you so much for your kind words! Honestly, I’m the lucky one though with my sweet little ones by my side. πŸ™‚

  19. Phil January 31, 2016 at 8:20 pm #

    Your Aunt Lynn would have been so proud of you and what you have accomplished.
    An amazing story for an amazing Mom.
    I wish you all the best for you and your family in the many years to come.

    UP

    • Kelly D
      Kelly D February 2, 2016 at 9:42 pm #

      Thank you so much for all the love, Uncle Phil! I know she is smiling down on us. She would have adored Hayes and Hadley so much…I just know it.

  20. Damaris January 31, 2016 at 10:25 pm #

    Wow!! So amazing to read this story. My son Daniel, now 8, also had an Omphalocele. He was also whisked away at birth, I barely saw him for 5 seconds, and onto surgery he went to correct it. He was in the NICU for 7 days until I got to take him home. He also started on a feeding tube to ensure everything was working normally. I was so lucky to take him home after a week, others were there for months and still needed multiple surgeries. Now he uses his lack of a real belly button as his war story if you will. His belly button looks like a cloth doll, sewn in place. But he is a happy, normal boy proud of his little scar. I am so happy your boy is doing well too and others that are dealing with this can see there is hope.

    • Kelly D
      Kelly D February 2, 2016 at 9:43 pm #

      Amazing it is, Damaris! I love connecting with other O families and hearing stories of their little warriors too. What a beautiful, crazy, rollercoaster we’ve been on. These are such special kids, and I’m so thankful that I get to be part of the story.

  21. Jackie M January 31, 2016 at 10:49 pm #

    I’m in tears – what a beautiful story and a beautiful little boy you have! You are one tough mama, and a huge inspiration! So glad to hear he is thriving.

    • Kelly D
      Kelly D February 2, 2016 at 9:40 pm #

      Thank you, Jackie! I am blessed beyond measure and so honored to share our story on the other side.

  22. Betsy Z February 1, 2016 at 10:11 am #

    Kelly,
    I had no idea of this amazing part of your story! Y’know I noticed Haye’s scar at the pool and for a quick moment I thought to ask you about it. So amazing how a medical history as tumultuous as his has manifested physically in such a way as to cause merely a fleeting glance. AMEN, what a beautiful story! Thank you for sharing!

    • Kelly D
      Kelly D February 2, 2016 at 9:41 pm #

      Thanks for the sweet words, Betsy. It’s amazing how I don’t even think to mention the scar anymore. Hope he’s always as self confident about it as he is now!

  23. Kristin January 31, 2017 at 8:41 am #

    You have a beautiful boy with a sparkling smile! I can’t imagine what it felt like to go through all that you did but thank you for opening your heart and giving us a glimpse. I especially appreciate your reminder that first you were just a mom and her baby. As an outsider it’s easy to be distracted by the differences we see but I really appreciate your gentle way of expressing that truth to us. I will always remember that now.

    • Kelly D
      Kelly D February 2, 2017 at 12:18 pm #

      Thank you so much for your kind words, Kristin. He has taught me SO much in motherhood … and in life in general. Amazing how such little people can make such a big impact on us. <3

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