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Anthony’s Story

Hi! Welcome to our CaringBridge website. We've created it to keep friends and family updated about Anthony's medical journey, to help us remember what Anthony has endured and to show how God has walked with us along the way. Some of the pictures we have posted of Anthony after surgery may be difficult for young children to see, so please use caution as you look through the photo section. We appreciate your continued prayers and hope our updates will allow you to pray for his specific needs. Thank you for visiting!



On the last day of 2002, baby number 3 arrived during a particularly stormy morning in Mobile, Alabama. After a very normal pregnancy, complete with several weeks (or was it months?) of morning sickness and all the other usual pregnancy pleasantries, a scheduled c-section was the means of his arrival. It was a textbook delivery with our new son getting a perfect score on his Apgar test! He was named and whisked off to the hospital nursery while they finished with me in the OR. We were, and still are, thrilled to have added Anthony Patrick to our family, giving our daughters, Samantha and Abby, a baby brother. (Samantha, by the way, had prayed for just that about a year before his birth!)

After an extremely long wait in the recovery room without seeing the baby, we asked a nurse about the delay. She said, "His lungs are a bit wet which is common for a c-section baby. We will bring him to you soon." So we waited. And waited. Finally a nurse came to take us to see him in the nursery. He looked beautiful and when I asked the nurse attending to him how he was doing, she answered, "He is doing well, aside from the heart murmur."

Heart murmur? Obviously she thought we had already heard the news. Unknown to us, our pediatrician heard a heart murmur and immediately had him checked by a pediatric cardiologist who "just happened"* to be in the nursery at the same time Anthony arrived.  *Read: "God ordained." After I had been transferred to my own room the cardiologist entered the room with a drawing in her hand. This was our first moment to learn that whenever a doctor draws a picture of something, there is a problem.

Bicuspid valve. Aortic valve stenosis. Surgery. Atlanta, Birmingham, or New Orleans. Critical. We had a very quick introduction to the world of congenital heart defects during this relatively short meeting in my hospital room. Before I had been worried about the delay in starting breastfeeding; then I found out that breastfeeding him could kill him because of the strain on his heart. Before I had been wondering when I could hold him; then I found out that he was so sick that he would not even be staying in the same hospital with me. Before I thought that open-heart surgery on a newborn would be too risky; then I found out that not doing open-heart surgery on our newborn would result in death. How can so much change so quickly?

The nurses responsible for transferring Anthony to another local hospital took pity on me. The tears in my eyes and the news that I had yet to hold him moved them to break the rules. They removed Anthony from his special covered bed and let me hold him before they transported him. What a joy to feel him in my arms after hours of waiting. His immediate instinct to nurse broke my heart as I had to refuse him. I will never forget that goodbye.

Ray stayed with him. The girls saw him. Then Ray and Anthony were flown to Atlanta, specifically to Egleston Children's Hopsital, connected with Emory University. A few days later the girls and I joined them there. (Thank you to Ray's mom and dad and to my sister for helping us during this time!)

We were now in a place where we were not alone. There were other shell-shocked parents wandering the halls. Other moms wheeled in wheelchairs because they, too, had just had c-sections. There were others pumping milk in the provided room and storing their breast milk in the CICU freezer hoping that someday it would be used. Here we were flooded with new information and experiences. Here we saw beyond the diagnosis. We saw the faces of the children; some of whom had repair surgeries, some of whom had heart transplants, and one on whom last rites had been performed. Here we learned the risks and the potential complications. But, here, we also learned to hope.

The doctors watched Anthony for the first few days. For awhile they paralyzed him to keep him from over-exerting. On the 6th of January they performed a balloon valvuloplasty. They had hoped it would open the stenotic--narrowed--valve. It failed. In fact, his condition worsened.

On January 9th they scheduled a Ross procedure. Little did we know at the time, but the cardiac floor was "abuzz" with the news that the Herman baby was going to have a "Ross." It was not common to perform this procedure on a newborn, but for Anthony this surgery was his only chance of survival. They successfully took out his malformed aortic valve, replaced it with his own pulmonary valve, and replaced his pulmonary valve with a homograft--a cadaver's valve. He started out with one compromised valve and ended up with two, but it saved his life. Ten years earlier there would have been no option for us. God is good!

Latest Journal Update

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Almost perfect.

After nine straight weeks at home (nine!), Anthony and I were back in Dallas yesterday for regularly scheduled clinic appointments with transplant and pulmonology. It was a long day, but, for the most part, we received good news:

His echo is unchanged.

His heart pressures are perfect, allowing them to remove the last of his pulmonary hypertension medication.

His lungs are clear. (To his relief and ours, the chronic cough he has had since transplant is finally gone, thanks to the “Z-pack” prescribed back in October!)

His pulmonary function test was perfect.

And his labs look great.

Well, almost.

His liver enzyme levels are still rising.

And his spleen is palpable again.

Sigh.

Dr. Das isn’t sure why we are seeing these changes, but he thinks lingering CMV could be the culprit.

Another CMV test result will be back in a couple of days, letting them know whether or not they need to increase his daily dose of Valcyte, the anti-viral used to prevent CMV. His dose was lowered just a few weeks ago in response to those rising liver numbers to see whether the medication itself was causing them to rise. But now, with his spleen enlarged again, it is possible the higher dose may be necessary to keep CMV under control.

Although we are disappointed about this latest issue, it certainly doesn’t seem to be slowing Anthony down! Even his providers say that he looks better and better every time they see him. A true transformation from a year ago.

Please pray with us that whatever is going on with him will be remedied easily and that he will continue to enjoy good health throughout the holidays. Also, please join us in praying for the donor family as they celebrate their first Christmas without their loved one. 

Merry Christmas to all of you!

(The posted picture was taken one year ago, just a few weeks before Anthony received his life-saving gift. The hands are his, and the ornament was on a tree at the RMHD.)
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Comments

2 Comments

jeanne estes
By JEANNE ESTES
THANKS KATHLEEN FOR YOUR UPDATE. WE WILL CONTINUE TO PRAY FOR ALL OF YOU.

SO GREAT ANTHONY IS PROGRESSING.

LOVE CLAY AND JEANNE
Jean Clark
By Jean Clark
God's perfect will and timing will continue to bless Anthony throughout his entire lifetime.

We wish you a Merry Christmas and a healthy New Year!