Monday, August 23, 2010

An unexpected Journey....A Heart that changed us forever

Every Heart Has a Story
A fellow heart mom created a special event for all of us - the "Every Heart Has a Story" event. It is a wonderful forum for heart moms to share our stories with each other and meet those with similar challenges, hopes and fears.

Our sweet baby boy, Sawyer “Zeb” Lyle was born on March 2, 2007. He was diagnosed as a healthy baby boy weighing 9lbs, 9oz. The doctor did detect a slight heart murmur but told us that because he was 3 wks early that it was perfectly normal and would go away in a week or two. During our hospital stay I noticed that his nail beds of his hands and feet were blue. I mentioned this on two occasions to the nurses and was told that it was perfectly normal. Even with this concern, we were sent home without a pulse ox test. It was never even mentioned to us as an option.

Our sweet 4 week old baby ...ZEB

At 4 wks old, I noticed that Zeb was unusually fussy before bedtime, not his normal cheerful self. He would not eat, he was sweating and I thought he was breathing funny, more through his stomach than through his chest. Of course I called the doctor’s office after hours and was forwarded to an ER Triage Nurse and had spoken with her two times during the night. She basically suggested I was being overly concerned and that he must just have a tummy ache, and suggested pedialyte and following up with the pediatrician. Finally I had enough, I knew something was seriously wrong, It was almost morning. I called the Doctors office again and basically demanded that they see Zeb. I got in the car and my husband met us at the Doctors office at 7am before they were even open. As soon as his pediatrician saw him, he also knew something was wrong. He called 911 and had an ambulance come to his office and he was taken directly to ICU at our local Children’s Hospital. After several tests a Pediatric Cardiologist came in and and told us that our baby was in critical heart failure and that he was born with a Congenital Heart Defect, aka CHD. A WHAT?? CHD??? We were so clueless. We had never heard of such a thing. WHY ?? Why is it that we had never heard of the #1 Birth Defect in the United States?? He was diagnosed with Severe Aortic Stenosis and a bicuspid Aortic Valve. The gratient pressure in his little heart was well over 100, his left ventricle was enlarged and overworked due to an undiagnosed CHD. How could this have happened? We were told that we made it to the hospital just in time, another hour or two without help and he would have died. We would have lost our precious son. The nightmare continued as our baby was put into a helicopter and flown to Charleston, SC to MUSC the only hospital in our area to perform the life saving procedure he needed. I pray that no other parents should ever have to see their baby flown away in a helicopter and especially not knowing if you would see them alive again. This was a horrible nightmare. It didn’t have to happen this way.
Zeb's 1st helicopter ride....Not what we would have chosen..
We finally 4 hours later reached our baby boy as we had to drive to Charleston. After his procedure were taken into a small room and told that they were able to open his valve to relieve the pressure but because he was so small it had torn and a caused a leak or insufficiency in the valve. I can today, still hear that Dr. Say...”Your son will have to have multiple surgeries throughout his life”. This was not a dream, this was our new reality. After 6 days, we were sent home and monitored weekly by the Cardiologist as to the next step to help our son’s heart. Exactly 4 wks later, he was 8 wks old he began to show signs of rapid breathing, sweating again and he was sent again to Charleston via ambulance as all the flights were grounded due to the weather and we could not wait and extra day. They were able to do the aortic vulvoplasty ( a closed heart surgery) again to open up the valve. He was sent home again 7 days later with the knowledge that he would be closely monitored because he would have to have another procedure and/or surgery again. This is the hardest thing I have ever had to face. Watching my child grow, play, laugh and live and waiting for the ball to drop, the ax to fall or whatever term you want to use. Cardilogist visit after visit we held our breath, waiting.

This is how we our baby looked the next time we saw him...

It happened when we least expected it. At our routine 3 month cardiologist appointment in February 2, 2010 the cardiologist gave us the news. Zeb’s heart has taken a turn for the worse and he will need Open Heart Surgery to survive. This was a hard day.  I cannot explain this, there are no words.

Zeb’s Open Heart Surgery was scheduled for February 26, 2010 in Charleston. We planned and prayed and readied ourselves as much as one could possible do. How do you ready yourself for your toddler to have open heart surgery? The day before we were scheduled to leave we were called from MUSC to tell us that they had two emergency newborn cases and Zeb’s surgery would have to be bumped back a little. As distraught as I was to be moved after all the anticipation and planning, etc. I wondered if those parents knew about CHD before it came in like a flood into their lives. The new date was given to me over the phone via the nurse and I think that in my world time stopped for a moment. The new date was 3-2-10. This date is our son’s 3rd birthday. I was so upset and speechless, I had to tell the lady I would call her back. My husband then had to take over, It was more than I could take. He called her back and confirmed the date. It was so heartbreaking. What child deserves to have open heart surgery on their birthday? However as parents, we have seen heart failure and we don’t ever want to go there again. So we agreed. Of course this birthday would be very different, no birthday party, no celebration, but much needed open heart surgery to save our son’s life.
This was our baby's 3rd birthday

Zeb had his open heart surgery on his birthday 3-2-10. They were able to do a valve repair instead of the Ross Procedure which was the planned surgery. Seven days later were sent home with the news that this is only temporary. CHD never goes away, there is no cure. Zeb is still recovering and we are so THANKFUL every day for the blessing our our son.

Getting better...Mickey Mouse always helps...
Currently, Zeb is doing very well, he has recently started preschool and we are fully into the adventure of potty training. We look at him sometimes and we forget only for a moment, but we are reminded forever by a somewhat faded line down his chest of where he has been and what God has brought him through. It still sometimes can take my breath, not because I hate seeing it but because I am amazed once again we would be given such a gift, such a fighter. We go back to cardiologist in September and we will once again, wait to hear the report. It is a hard thing but I know that we can do all things through Christ. His valve repair at his last visit looked fantastic, his gratient was a little higher than I would have hoped it would be, and he does have a mild mitral valve leak, but all in all he is doing great! I appreciate all my wonderful friends and your love, support and prayers. You can’t know how much you mean to me.

Zeb Today... 3 years old...OUR MIRACLE!

We know that each day is a gift. We are thankful for Zeb and the heart that changed our lives forever.

We have learned a lot and we don’t take many things for granted anymore. We are different people.

I don’t know why we were chosen for this journey, but we are Blessed to have Zeb in our lives and Thankful to be his parents. He is Amazing and our Hero. He is our Superman!! :)


Much Love and Many Blessings,



  1. The first part of it I could have written myself - the dismissive healthcare professionals up to the horror of the realisation of the change in the future course of yours and your baby's life. We're at the start of our CHD journey (9 months in!) and playing the waiting game for that valve replacement.

    Thank you for sharing Zeb's story - its reassuring to hear a positive story from a heart mum thats been there. I'm so pleased Zeb is recovering well x

  2. Zeb is such a great little guy with an incredible story! Gosh Rhonda there seems to be so many of us who found out after birth....after taking our precious babes home....and almost losing them to not being diagnosed.

    Thanks for being a part of my blog event!

  3. I really wish so many people hadn't found out after they took their babies home. I can't imagine how scary that would be. We had time to prepare and even though it made the pregnancy harder, it sure made it easier knowing a little bit of what would got thrown into it with no warning whatsoever.

    Zeb is a superman and a real cutie pie.

  4. Thank you for sharing your wonderful story with us. Our special heart babies are simply amazing :O)

  5. Thank you for posting this. Can I ask? Have they said to you...given his defects, that if he had been diagnosed earlier his outcomes would have been different? Fewer surgeries, etc? I'm really trying to paint a picture for those that make policy about early diagnosis. Your story is amazing!! Blessing to you, Zeb and the whole family. Annamarie (Eve's heart mom,

  6. You are amazing! I feel God chose you to be Zeb's mom because He knew you would not lose your faith but rather share it! I am new on the CHD journey myself. We were blessed with mild issues in our daughter, but it made me realize that she was a gift with a great purpose! I am actually holding a golf tournament fundraiser in October to raise money for The Children's Heart Foundation. They use the money to fund vital research for CHD. And I have begun developing. CHF capter in Virginia. Keep up the good fight and we will pray you through!

  7. Loved reading Zeb's story...what a handsome little hero he is :)

    Stephanie and Braeden(HLHS)

  8. Hi Rhonda! I found your blog through the Every Heart Has a Story project/blog. I clicked on Zeb's story because my son, too, was born with severe aortic stenosis and what they think is a bicuspid valve.

    Unlike Zeb, Marcus was diagnosed in utero -- at 24 weeks gestation. Although it made for a difficult and scary pregnancy, at least we knew what to expect when he was born. He was born by c-section at 34 weeks gestation -- it was 9am and the cath lab was ready for his immediate valvuloplasty procedure. I didn't get to hold him or see him before he was whisked away to be stablized & intubated, but I knew that I wouldn't. Marcus spent 3.5 weeks in the NICU, but since he's come home he has been healthy and thriving. Like you, we know a valve repair or replacement is in our future and it's unnerving not too know when the surgery will occur.

    Many times I feel robbed of the sweet excitement and anticipation the final trimester of pregnancy brings to so many women (Marcus is our first (only?) child). And at times I feel robbed of the bonding that happens in the minutes, hours & days after birth... but when I hear your story, Zeb's story, I am so grateful that we had an early diagnosis.

    Thank you for sharing! I hope we can stay connected throughout our sons' journeys. :-)

  9. Courtaney,
    Do you have a blog or a facebook. I would love to connect with you and I have actually met several other mothers with children that have the same diagnosis as our boys. You can email me at Thank you for reading my blog. I know God allows things for a reason and if we can help each other along the way, I am BLESSED to do it. Hope to hear from you soon.
    ps. You are the 1st mom I have ever met that Aortic Stenosis was diagnosed in utero..WOW

    Rhonda :)

  10. Rhonda,

    It is so amazing to read these stories from the beginning. I have followed your story for a while but never knew the "whole" story. I can't believe you were dismissed by doctors so much initially! Praise God you were persistent and caught it in time. Just goes to show- mommy's instinct is always right! Even though I knew Zeb had surgery on his birthday and I followed your blog through it- it just gave me chills to read about it again. You have amazing strength- so does Zeb.

    Thanks for sharing his story!

    Mommy to Andrew, TOF