Faces of CHD - Jackson & Jeremiah

Although congenital heart defects are the #1 birth defect worldwide and the leading cause of infant deaths in the US, CHD research is grossly underfunded despite its prevalence. The best way to ensure that money you give will be going specifically to CHD research and supporting families is to donate to organizations that are entirely devoted to fighting CHDs.  The Children's Heart Foundation, Mended Little Hearts, Adult Congenital Heart Association, Sisters By Heart, cardiac units at local children's hospitals, etc. are excellent organizations that support the CHD community and exclusively fund research related to congenital heart defects.  Research is so important because it is the only way that improvements will continue to be made for children and adults affected by a congenital heart defect.  

Heart Hero Jackson

This is Jackson.  He is almost 3 years old and he was born with Hypoplastic Left Heart Syndrome (HLHS).  His heart defect was detected 2 days after birth after becoming very sick and almost losing his life.  His first surgery, the Norwood, was performed at 7 days old.  The second surgery, the Glenn, was performed at 4 months old.  The third stage of the scheduled surgeries, the Fontan, will be performed this summer at 3 years old.  Jackson is a true blessing and I cannot imagine life without him.  Honestly I don't remember life before him.  Being my first child, I was extremely excited to bring him into the world.  I would have never imagined that this would happen.  Before I could even get used to the fact of being a mother, it was almost taken away from me.  I'm thankful to God that he chose me to be Jackson's mother.  He is a joy to be around and the sweetest baby boy.  There are no words for the love I have for him.

Heart Hero Jeremiah

It all started with our 20 week ultrasound; that is the day we learned that our little boy had a heart defect.  We were told that he had a condition known as Hypoplastic Left Heart Syndrome (HLHS).  We had no family history of congenital heart defects.

Jeremiah James Burford was born April 8th 2015.  The first time I looked at his sweet face it was through the clear walls of an isolate transporter.  He looked great and at 8 lbs and 10 oz, super chunky.  That extra birth weight would help him for his first surgery at just 6 days old.  The Norwood went well.  Jeremiah did have setbacks during his recovery at Children's.  His lungs collapsed 3 different times and he struggled with feedings.  We were discharged 6 weeks after surgery.  Once we were home we had several set backs with feeding that put us in the CVICU just 6 days later.  We worked on feedings and were re-released almost 3 weeks later.  Feeding and rates and pumps and bags and the Nutritionist...my head spins thinking about just how crazy it all made me.  Somehow in the middle of all the feeding issues he was still climbing up the growth chart.

By July he was 3 and 1/2 months old and we were heading in for a heart cath.  While in for that procedure we were told that Jeremiah would have his Glenn open heart surgery in a week.  My husband and I were in shock.  Jeremiah needed it and so we pushed forward.  The recovery for the Glenn was just as scary.  We discovered that Jeremiah had a condition called broncomalacia, which explained his multiple lung collapses with the Norwood and also with the Glenn.  We finally came home for good 5 weeks later.


We were told at his last appointment that he looked great.  We anticipate the final open heart surgery to be around 3 years of age.  We may have it sooner than that.  What I have learned while going through this is that there are no textbook answers.  Each child is different, and Jeremiah loves to surprise us.  We still have issues with food.  He is just now finishing jars of baby food, but I will take it!  My 10 month old boy is my hero. he is beautiful and funny and a complete miracle.    People ask me if this has changed me.  How can you not be a totally different person after this?  I am changed forever.  Loving a heart baby is a powerful, life-changing kind of love.

Faces of CHD - Jack & Talia

Many congenital heart defects remain undiagnosed until after the baby is born.  With critical heart defects this can be deadly because these babies need immediate medical support and will require open heart surgery within a few days after birth.  A simple non-invasive test called pulse oximetry can be done after birth to determine if your baby is affected by a CHD.  Pulse oximetry measures the amount of oxygen in the blood.  Currently many states do not require mandatory pulse oximetry testing on newborns.  Symptoms of a possible heart defect in a newborn include:  bluish skin/extremities, heavy/labored breathing, trouble nursing and breathing at the same time, abnormal heart rate, failure to thrive.  

Heart Hero Jack

Jack Cruz Kramer was born on 11 March 2014 with a surprise diagnosis of Hypoplastic Left Heart Syndrome.  I had many ultrasounds while pregnant, but his heart defect wasn't detected until birth.  It was apparent the minute he was born that something wasn't right.  Low oxygen saturations and a heart murmur called for an echocardiogram, and within 24 hours Jack was flown via jet to a pediatric cardiovascular unit in Birmingham, Alabama.  There, he was stabilized and our worlds were shattered with the news of his heart condition.  He underwent his first open heart surgery, the Norwood, at one week old.  He had a rough recovery, including having to be reintubated several times due to a paralyzed diaphragm.  We finally took Jack home for the first time at two months old.  After just two weeks, we rushed back to the hospital due to low oxygen saturations.  Jack was then flown to Boston Children's Hospital and underwent an emergency cardiac catheterization.  Jack then had his second cardiac cath and then second open heart surgery, the Glenn, at five months old.  At nine months old, he had his third cardiac cath to ensure his heart was functioning well and thankfully it was deemed a "happy hypoplast heart!"  Jack's next procedure will be another cath and then open heart surgery, the Fontan, this summer in Boston.

Looking at Jack, you'd have no idea anything is wrong with him.  He may be a bit small due to his half-heart burning so many calories, but he's just like any other kid his age.  He loves to be outdoors and go on adventures.  He enjoys swimming, playing with balls and cars, and reading.  He's a very social little guy with a lot of friends.  he's already lived in three states and visited 26 states.  He's proving that nothing can hold him back from an amazing life.

You can stay up to date on Jack's story on his Facebook page:  https://www.facebook.com/groups/babyjack/

Heart Hero Talia

Talia was born on March 10, 2013 with the CHD Double Outlet Right Ventricle, Mitral Valve Atresia, and Pulmonary Stenosis.  Within five hours of being born, she stopped breathing and required intubation.  I knew of her defect before her birth, but it did not prepare me for what would be the hardest year of my life.  The combination of these three defects led us to have three open heart surgeries, one of which was emergent, a Gastric tube placed, and combination of almost 6+ months in the hospital.  She was born with a cleft lip, which could not be repaired until she was a year old due to her heart complications.  Our little angel is such a warrior, having been through so much pain and suffering in such a short period of time.  Today she is a bright, strong and happy little girl.  Our life doesn't come without its struggles, but Talia inspires me every day to better myself as both a mother and an individual, because we know our days are precious and a gift from God.  We still have a long road ahead of us, with the upcoming fourth open heart and some cleft lip repair, but are optimistic about the road ahead and happy to have the hard part behind us.

Faces of CHD - Aiden & Landon

There are more than 40 different types of congenital heart defects.  Most causes of CHDs are unknown.  Only 15-20% of all CHDs are related to known genetic causes.  Congenital heart defects develop in the first few weeks of pregnancy, typically before the woman even knows she is pregnant.

Heart Hero Aiden

Aiden Clint Jeffus was born September 24, 2012 with Hypoplastic Left Heart Syndrome.  He was born at the University of Mississippi Medical Center in Jackson, MS.  He had his first of three open heart surgeries when he was eight days old (Norwood).  At six months old, he had his second open heart surgery (Glenn).  Currently we are preparing for his last of the three surgeries this summer.

You will never meet more of a people person than Aiden.  He never meets a stranger and has a personality that lights up a room.  Aiden loves all things Toy Story and Avengers, and Captain America is his favorite.  Like any other little boy, Aiden enjoys being outside and riding on his tractor.

Heart Hero Landon

Landon is my nephew.  He changed my life in 5 short weeks.  Landon was born premature at just 24 weeks.  A few days after birth he was diagnosed with several heart defects with the worst being a severe aortic stenosis which would eventually lead to Hypoplastic Left Heart Syndrome.  Landon's parents are two of the strongest people I know.  Matt, my brother, and his wife Katie never faltered.  I remember one of Landon's charge nurses remarking about Landon's feisty spirit - she said that she felt he would have many more good days than bad ones while he was at UAB and she was right.  Landon was the spitting image of his daddy.  He loved to suck on his fingers and he enjoyed his mother's voice.  He now has a perfect heart and is resting at the feet of Jesus.  I am so thankful that God gave us Landon, if even for a painfully short time.  We pray that one day no child will ever be lost to a CHD.

Faces Of Congenital Heart Defects (CHD) - Landon Jace & William

February 7-14th is recognized as CHD Awareness Week and this year I wanted to celebrate that week by showing you the faces and stories of some incredible heart warriors that we have had the opportunity to get to know along the way.  A congenital heart defect is a problem with the heart's structure that is present at birth.  Congenital heart defects are the most common birth defect and occur in a little over 1 in 100 babies.  1 out of every 4 babies born with a heart defect will have a critical CHD which will require surgery within the first few days after birth in order to survive.

Facts are so important, but they only tell part of the story.  The most important part of the story is the families impacted by CHDs; they are the stories of the children, grandchildren, friends, coworkers that were born with a congenital heart defect.  They are the stories of the children and adults fighting huge battles to survive.  They are also the stories of the children taken from this world too soon due to a CHD.  These are their stories.

 Over the next several days as I feature different children impacted by a congenital heart defect, I hope that you will see the importance of raising awareness and funds to fight against this birth defect and the reason that CHD awareness is a cause close to the hearts of so many.

Heart Hero LANDON JACE

This is our hero Landon Jace! He is 23 months old and was born with a CHD called Hypoplastic Left Heart Syndrome. We were unaware of Landon's heart defect until the day after he was born, when he was transferred because of cyanosis to a nearby hospital with a NICU. He was then given an Echo and diagnosed. Within hours he was life flighted to UMMC Blair E. Batson. He had his first of 3 surgeries (the Norwood) on March 7 at 9 days old. He had a few set backs but was finally able to come home at 21 days old. He had a few more hospital stays for various things and on June 16th he had his pre Glenn Cath. And the day before he was suppose to be admitted into the hospital for his second open heart surgery (the Glenn) we got a call from his cardiologist telling us that he was going to need a second heart Cath because his Innominate artery was severely narrowed. The bodies way of dealing with this was to grow a bunch of little veins around the artery to help pass the blood. But now the blood is going both ways through the veins instead of only traveling one way like it would through the artery. So he went in and had the second heart Cath to correct the artery. And on August 7th at 5 months he had the 2nd open heart surgery (the Glenn). He rocked this surgery and was out of the hospital in 4 days. Landon will go in next month in February for his pre Fontan cath and if all goes well should have his 3rd open heart surgery also next month right before his 2nd birthday. Landon is our HERO!!! He amazes us every day with his resilience and how he keeps his happy, loving, and energetic personality. 

Heart Hero WILLIAM

William Franklin Stroud was born with Hypoplastic Right Heart Syndrome and Transposition of the Great Arteries along with several other congenital heart defects. Even though his parents, Heather and Justin, knew about William’s heart before he was born, they had no idea how much of a fighter William would turn out to be.



At six days old, William underwent his first of three open-heart surgeries. He also underwent two surgeries, two heart catheterizations, pacemaker surgery and countless bedside procedures in order for him to have a chance at life. Through all of the surgeries and emergencies, William always showed the world that he was still fighting with his smiles.



Despite the amazing efforts of the staff at the Pediatric and Congenital Heart Center at Children’s Hospital of Alabama, William was never able to leave the hospital, living only to be four and a half months old. William passed on January 15, 2014. 

Christmas in Heaven

The holidays have been extremely difficult for our family.  I expected it to be tough, but I didn’t expect the pain of missing Hudson to take my breath away like it did right after his death.  There are days that I feel like I’m drowning, but thankfully the majority of days I feel God’s peace.

I wonder what its like in Heaven at Christmas.  I imagine Hudson joining in singing with a beautiful heavenly choir to celebrate our Savior’s birthday.  I’m sure joy radiates from Heaven all of the time, but I imagine it is extra special at Christmas.  What an incredible gift for a king to leave his perfect kingdom to come to a broken and hurting world and die for the sins of all of humanity.  I think about how much I miss Hudson and wish he was here with me, and when I step back from that it makes me think about how Jesus must hurt so much when we are distant from him.  He so desperately wants to be in our lives.  I’m in awe of the love that Jesus has for us, and I’m glad Hudson is experiencing that directly.  Christmas really is about God’s ultimate gift of love in the form of a baby boy.  I’m glad my son is in the arms of his son.

Even though there has been a lot of tragedy in the past year, there are so many things I am thankful for and I wanted to share them with you.

·      Jesus Christ for conquering death and pain in this world and providing a way for me to spend eternity with my creator and loved ones.

·      My incredible husband & Hudson’s amazing Dada.  I’m not sure how I could have done it without you.  You are my perfect match.

·      Our family for supporting us throughout our entire journey with Hudson and especially lately for being so respectful of changing holiday traditions to make it a little easier on us.

·      Incredible friends that have prayed, called, messaged, sent cards and flowers and gifts.  I am thankful for having people in my life that didn’t abandon us when things were ugly, uncomfortable, and awkward.  You have held our hands and wiped our tears, let us talk about Hudson and continue to remember our precious son.  I’m thankful that my friends haven’t given up on me when I probably only respond to their calls and messages less than half of the time. 

·      Hudson’s entire medical team.  You inspire me and are changing lives on a daily basis.  Thank you for giving me the best 23 months of my life.

·      Our church for the amazing support they have offered us.  I’m also so appreciative of the way they took charge of Hudson’s memorial service and made it more special than I could have ever hoped for.

·      Our work families for supporting us and allowing Hudson to take first priority over work obligations. 

·      I am so blown away and thankful for everyone that participated in the first annual Hudson’s Day of Kindness on June 25^th.  Thank you for helping me tell my son’s story and keep his memory alive.  I hope you will continue this tradition with us every year.

·      Thank you to everyone that has donated to Children’s of Alabama in Hudson’s memory.  This memorial fund will remain open indefinitely and every time someone specifies the name Hudson Simmons, 100% of the proceeds will go to life-saving research for other children affected by congenital heart defects and heart problems.  To date we have raised over $9,000 to change the lives of heart families at Children’s of Alabama and hopefully around the world.  Thank you for caring about something that we are so passionate about. 

·      Last but certainly not least is my son, Hudson.  Thank you for making me a mother.  I love you with a fierceness that I didn’t realize existed.  You made me better, more compassionate, more aware, more loving.  You are my greatest accomplishment and the very best part of me.  I can’t wait until the day that we are running into each other’s arms again.  I love you forever Hudson.  Merry Christmas my sweet love!

Hudson's 1st Christmas - 6 months old

Finding Hope In The Midst Of Grief

It’s been three months.  Three months since I’ve kissed his sweet face, three months since I’ve held him, three months since I’ve run my hands through his precious curly hair and three months since I’ve heard him say those heart-melting words “I love you MomMom.”  I miss him so much and no amount of time will ever change that.  It feels like an eternity since I have seen him even though it really hasn’t been that long at all.  Just like anyone dealing with the loss of a loved one, I have good moments and also moments of intense grief where it’s a struggle just to breathe.  In the midst of the good and bad, I still feel hope and peace.  Through it all there is still that quiet voice I feel in my heart telling me I love you and I will never leave you.  I am God in life and I am still God in death.

After finding out Hudson’s diagnosis of HLHS, I remember the devastation I felt and holding on to hope of a miracle.  I prayed Hudson’s heart would be physically healed before he was born.  When it wasn’t, I prayed for him to survive the Norwood surgery.  After he made it through the Norwood I started praying that he would live a long, healthy, and happy life.  I think one of the reasons people have such a difficult time accepting that Jesus is the Savior of the world is because they can’t grasp how he could allow tragedy to occur.  Also I think sometimes Christians give up on their faith when they have remained faithful in belief and prayer, but still feel like Jesus abandoned them.  At the very beginning of our journey before Hudson was even born, I really struggled with the why’s of our situation.  In my mind the very worst-case scenario was that Hudson wouldn’t survive.  Even about 6 months ago I was dealing with anxiety about Hudson’s heart and his long-term prognosis.  As I was discussing this with a physician, I remember him saying that I had to accept the fact that I would probably outlive my child.  I broke down and basically had a panic attack in the office because I was so scared that he might be right and I didn’t feel like I could ever survive something like that.  Looking back I realize that I was trying to deal with my greatest fear by myself.  Now that my worst fear has actually come true, it’s crazy how much calmer and at peace I am with everything.  The reason for this is because Jesus is giving me his peace and comfort.  You see it is a lie that if you pray hard enough or if you live a moral life that everything will be fine.  Jesus does still save us and heal every part of our lives, but that isn’t promised here on Earth.  His promise for us is in Heaven.  I wish Hudson’s heart had been healed here on Earth, but I know that he is healed in Heaven.  God is God in life and he is God in death.  Unfortunately we do live in a broken world and the ways of this world are not his ways, but Jesus is still here loving, holding, and carrying us through the brokenness.

There is so much freedom in God’s promise of Heaven through a personal relationship with Jesus Christ.  The days here on Earth without Hudson are very difficult, but I believe God’s word.  I am finding my hope at the cross, the place where God allowed his son to die to save humanity.  Even at the cross God could have stopped the tragedy of his son dying, but instead because of his great love he choose to give his life so that we could have eternal life.  We don’t always understand why things happen the way that they do, but I believe that good can come out of the most tragic of situations.  I miss Hudson so much, but I know that I will see my precious son again and that this life is not the end.  Jesus is holding my head up when I don’t have the strength to, and he is reminding me who he is and who I am.  He is my Savior and I am his child.  He is the God in life and death.  He is the ultimate healer and has made Hudson whole and perfect.  Don’t let religion, politics, and hypocrisy of people take away from who you believe God is and the most important relationship you could ever have.  I believe Jesus is relentlessly pursuing us all and that he wants to know us personally.  Jesus loves you more in a moment than anyone could in a lifetime.

God’s Truths:

Revelation 21:4 – And God will wipe away every tear from their eyes, there shall be no more death nor sorrow nor crying for the former things have passed away.

Isaiah 43:2 – When you go through deep waters I will be with you and when you pass through the rivers they will not sweep you over.

Titus 3:5 – He saved us not because of righteous things we have done but because of his mercy.  He washed away our sins, giving us a new birth and new life through the Holy Spirit.

Psalm 145:9 – The Lord is good to all; he has compassion on all he has made

Isaiah 49:15-16 – I will not forget you.  I have written your name on the palms of my hands.

Romans 8:18 – Yet what we suffer now is nothing compared to the glory he will reveal to us later.

John 3:16 – For God so loved the world that he gave his one and only Son, that whoever believes in him will not perish but have eternal life.

I Hope You Dance

Thank you so much to everyone who participated in Hudson’s Day of Kindness on June 25^th.  The response was overwhelming and so inspiring to me, and I can’t imagine a better way to celebrate Hudson’s birthday in Heaven.  I can just see him laughing and dancing and enjoying all of the incredible kindness that was spread in his honor that day.  We are making this an annual tradition and would love to have everyone be a part of it in the years to come.

Hudson was a child filled with joy.  He loved life and made the best out of every situation.  One of Hudson’s favorite things to do was dance.  Anytime he heard music he would start dancing, whether we were at home or out in public.  One day at the zoo we were walking along the sidewalk to go see some of the animals, and all of a sudden he just stopped and started dancing to the music that was playing in the background.  The zoo was packed and people were passing us on both sides, but I didn’t stop him or try to get him to move over.  I loved that he was truly living in the moment.  He taught me a very valuable lesson at the zoo that day.  Don’t worry about what everyone else is thinking, and don’t let fear stop you from enjoying life.  Dance, love, laugh, be silly and cherish the small moments.  When it’s all over the little things are what you will miss the most.

At Hudson’s memorial service, our pastor surprised us with an impromptu dance session.  It was perfect and just what Hudson would have wanted.  Everyone there learned Hudson’s three signature dance moves and we danced together for him.  I wanted to share a video I took several months ago on my cell phone of Hudson dancing.  It makes me smile every time I watch it and reminds me to stop and recognize the beautiful small moments that make up life.

I hope you dance.

https://drive.google.com/file/d/0B4mfAlWPs28TT1RxdGZsSnZyTTA/view?usp=sharing