Saturday, May 15, 2010



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.

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.

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.

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.

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.

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.

As a mother of a child with a CHD. I ask for all the children born with a CHD and for all the 1 in 100 children that will be born. Please help us to spread awareness about this disease that is the #1 Birth Defect. Help Parents know and not just fall into this nightmare like we did. Some parents don’t ever know until they lose their precious baby while it sleeps. We are one of the few lucky ones. We need more research, information to be given out to everyone expecting a baby, 2nd/3rd trimester ultrasounds, mandatory pulse ox tests on every newborn baby before the baby leaves the hospital. More money for much needed research to help find answers and a cure. We need your help for our precious children’s voices to be heard. Help us please. What if the next 1 in 100 were your child, grandchild, niece, nephew? What if?

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.

Love Zeb’s Mommy,

Rhonda Lyle
*** Just wanted to share Zeb's Letter of Hope...I will be back to blogging in a day or so..It's been crazy around here..Zeb 1st week back in "Society" so to speak or Preschool..He gets Rotavirus and we almost had another hospital its been wild..but THank GOd he is much much better!
Love and Blessings !

Rhonda ~


  1. Rhonda-
    I can relate to all of your feelings so closely! I do have to admit that it is hard for me to read your blog, because it can be so much reality for me! It still is so hard to sometimes face the reality of our situation. I remember the original hope that this diagnosis could have a one time surgery fix, and then the disappointment that it was a lot different then that! These kids are such Miracles in our lives and I am so grateful to God everyday! We have an amazing doctor that was persistent that Camden's Murmur was not normal, he was also born 3 weeks early and by 1 week of age had a heart gradient of over 100. It is hard to think that so easily we could have lost him. Thank You for sharing your feelings even though I know it is not easy! I hope that little Zeb is feeling well, roto virus has landed my oldest kid in the hospital before. No FUN!!! It is hard not to live in a bubble sometimes...all though that is not the answer:)
    God Bless your family, Love, Crystal

  2. Rhonda,
    {{{HUG}}} Wow, how our children's traumatic diagnosis with CHD mirrors each other. We found out when Logan was two weeks old and it was devastating. I am so glad that Zeb survived his scary diagnosis to become the very handsome boy he is today.

    It is a miracle that these kids have the ability to survive as long as they do undiagnosed. The sad reality is that there are so many that don't. That needs to change. No parent should have to ever lose their child to an undiagnosed heart defect, something that can he caught early.

    Thank you for bravely sharing your story with all of us.

  3. Beautifully written, Rhonda. Isn't it hard to write out your child's story? Every time I have done it for Beck, it takes a lot out of me! So glad that I was able to hear Zeb's story from the beginning. He sure is a miracle! I am so sorry that he had Rotavirus....yuck! Both my kiddos had it and it was awful! So glad he is doing better and that he avoided the hospital.

    Thanks so much for your sweet, uplifting, supportive comments. They mean more than you will know! Lots of love!

  4. Rhonda: Just found your blog from a search I had on google alerts for Aortic Stenosis. My daughter was born on 2/8/10 and we didn't find out till May 30th by taking her to urgent care for an eye infection that she also has the same problem as your precious boy. Thank the Lord that we took her in when we did. Her gradient was at 70 and was in for the ballon procedure the following tuesday. I am so happy to find your blog. It's comforting to find other Mom's going through the same thing and trusting in the Lord to take care of our babies. I am glad your sons surgery went well. People definately need to be aware of this problem. If I wouldn't have taken her in for her eye who knows what would have happened.

  5. Hope you don't mind either. I stole the poem from the bottom of your blog and posted it on mine. Absolutely LOVED it :) Nice meeting you!

  6. Your story is touching! I was linked to your blog by another heart-momma. I live in South Carolina and we are still deciding where to deliver. My precious son has been diagnosed prenatally (which I feel very Blessed about) with TOF. If you have the strengh and/or time, I'd love to bounce some questions off of you!